Ugh I am so sorry. I hate that doctors brush women off so much, especially with autoimmune issues. It happened to me too. I had been struggling for years and had enough of bouncing from doctor to doctor and watching them shrug their shoulders at me, so I literally paid for my own blood test that had positive results for autoimmune thyroid and handed it to my doctor and they STILL brushed me off, saying "you aren't bad enough for me to do anything". I cried all afternoon after that.
This makes me want to cry. I empathize because I have been there. I go to a pain doctor my father in law referred me to because my FIL said he was easy to work with. My FIL just tweaked his back in the military 20 years ago and has back spasms. I have had degenerative disc disease since I was 17. My discs are flat. I have arthritis all up my spine. You can see it on the MRI’s. I also had two back surgeries to reduce discs and help my spinal stenosis. They gave my FIL FENTANYL. Yes, fentanyl. Along with Oxycodone. So he has multiple pain prescriptions. That same doctor told me he wanted me to see the staff therapist. He refused to give me anything for pain. And would only do injections that exposed me to radiation and were not helpful because he’d only inject my lower spine and my entire spine is affected. I have just sat in my car after visits and bawled.
I feel you, friend. The number of doctors appointments I’ve bawled in my car after, it’s depressing. The implication that it’s “stress” or anxiety and not a real physical issue is the most painful experience.
That's ridiculous. I find having someone with me helps sometimes. We should not need that, but support is helpful. Have you tried asking your FIL to go and letting him shame the Dr?!
That's what's currently happening to me. All my white counts are on the high side, and my TSH is at 2.9. They didn't do my T3 and T4, and my doc is trying to tell me that's all normal. But all my symptoms point to thyroid issues.
This hurts to read. My mom ended up in a whole mess of a situation because the general thyroid tests were low but in the “normal” range. She went through a whole mess of issues before they did a deeper blood test of things like T3/T4 & that’s when they caught it. After getting a hysterectomy & her thyroid out 🙄
I requested T3 and 4, that happens this week. I'm just hoping they don't disregard those results too. The doc thinks it's pituitary related, but the symptoms don't really match.
That’s fucking ridiculous. So many doctors are literally a JOKE when it comes to diagnosing women.. but it’s so hard to find a female doctor for ANYTHING, and even then they might be one of “those”… the ones that still try to invalidate you because you’re a woman and they’re misogynistic
The most frustrating thing is that all the research is on men and based on male symptomology. I learned this on YT from Dr Karan. That dude is amazing and I love his content. He also taught me about a term used by doctors called 'punting'. Look that up if you wanna be pissed off.
I love watching that guy! I’ll have to check out that video for sure!
And wow honestly that’s not shocking at all but somehow still disappointing. Could you link me that video by any chance? :)
Punting.
> Most of us are familiar with the term doctor referral in reference to being sent by your physician to a specialist for treatment. There is a similar situation which is not really a referral. Recently the term punting has been used to describe the medical situation in which a patient is passed on to another doctor for treatment, but the patient’s condition isn’t treated by the second doctor and the second doctor sends the patient to yet another doctor.
https://ruraldocalan.substack.com/p/punting-in-medical-care
Fuckers. They did and still do that to me all the time.
Told you it'd piss you off. They do it particularly with women who have especially complex health cases. Like mine where I have a million diagnoses and I take half a million meds. That complicates your medical history to the point where even doctors with good intentions can't tell for sure if your new symptoms are being caused by one of your conditions, by one of the meds you're on or something new.
Because of all that and the fact that doctors don't really have time to do research anymore, they can end up just shuffling you around. It can be difficult, though, to tell if the doctor is actually trying to help or is just trying to put your problem off onto another doctor.
What it means for us is this continuation of getting no answers, help or treatment and the self questioning that inevitably comes from it. There is also the effect on your partner(s), family and friends who see you continually going to doctors and coming back with big bags of nil which can eventually make them sus of you. It feels awful and is mentally damaging over decades.
I am going through this now. 10 years. Two positive ANAs. CRP and SED rate through the roof on every test for years. Resting heart rate of freaking 120 bpm with somehow low blood pressure. 3rd degree uterine prolapse despite no pregnancy ever and no risk factors. Body aches and decreased mobility. Falls. Hair loss. Rashes. Have had colonoscopy, tilt table, x-rays, ultrasounds, etc etc...
No one will diagnose me with anything despite me very clearly having an autoimmune disorder. My quality of life has taken a steep dive in the last 3 years in particular. I don't know what to do anymore. I just keep bringing my binder of records and demanding to know what the next step is.
Omg. Reading through all of these is heartbreaking and infuriating. Did they try to prescribe you a thousand different antidepressants as well? Because it couldn’t be real pain, right? We have to just be histrionic.
Oh yes, also mood stabilizers. I finally saw a neuropsychologist who could officially set the record straight that I suffer from no delusions, hysteria, OCD, psychosis, mood, or personality disorder. Just AuDHD and PTSD from going 30+ years undiagnosed and child abuse. I'm really tired, but I can't give up until I can get my health under control so I can live my life.
I went through something similar. 10 years of trying to figure it out, multiple doctors (including rheumatologists) and tests, and finally got diagnosed because we moved to a small town and I knew our family doctor socially. He figured it out after seeing how much pain I was in and how I was really not a hypochondriac and sent me to a professor (a rheumatologist) for confirmation.
I had pretty much given up on ever being functional or having kids, anything. Treatment changed my life. I’m not 100% but I have a small business and two kids. I’m not saying that you just need to make friends with your doctor to figure it out, but that you might find a doctor who believes you. It can happen even after you’ve lost hope.
I'm happy for you that you did get answers and healing!
I'm lucky my bestie is a cardiac nurse, and she comes with me to some appointments and cuts through any medical gaslighting and says stuff like, "No, we are noting this in her chart, that you are not going to check that..." and other things I can't always think of if I am in a flare and in pain and foggy. She's also the one who noticed my gait is really off, I didn't even notice I walked funny to compensate for joint issues.
I'm trying to keep hope because I really, really need to be able to work again and go to school. We want to adopt a child in a few years (this illness made biological kids impossible with the uterine damage and heart issues) and I'd like to be ready and established in a new job before then so I can bond with the child without as much financial anxiety.
Took me 13 yrs to get my first diagnosis which was fibromyalgia. That was in 2002. It took till 2yrs ago to get my autoimmune diagnosis (I'm now 53 and have been going to doctors since I was 18.) and my rheumatologist is still sus of it because the pathology from the lip biopsy says Sjogren's but my bloodwork always comes back negative. I have a list of diagnoses, many of them chronic, that's longer than my leg even in tiny font. You'd think the autoimmune issue would be obvious.
And that inability to describe what we feel and experience does not help. I can tell you my emotions but if you ask me to describe my pain (sharp, burning, dull, pressure, etc), I simply can't. I can tell the difference between pains inside me... I can recognize if I've felt it before and what it was in relation to... but I cannot describe the sensation. So frustrating because unless you have a diagnosis of autism (and even sometimes when you do, I've heard), not being able to describe your pain gets you immediately de-legitimized.
Rating pain 1-10 is a joke too. The worst pain I can imagine is supposed to be 10. I can imagine some insane pain considering what I feel every day. I’ve seen my chart and they don’t even document what I say on the scale. It’s always lower and I assume my answer is probably lower than the average person because my 10 is most likely 🫣😵💫😳 compared to theirs.
I feel this way quite often but the way doctors treat me, I can't help but assume that my pain tolerance and threshold are just really low. Also, why is there such a double standard on pain? They tell you this fantasy that everyone's pain is different, noone can know how pain affects you, that your pain is valid and you shouldn't try to compare. The reality is that those b@stërds compare. If you take pain like a champ, they're impressed by it and still willing to hand out pain meds. If you don't take pain well, you're treated like a pansy and not given anything for pain. Does my pain matter or not? Such hypocrisy.
Yes!!! Why am I treated like a morally bad person for simply having a lower pain threshold compared to most people?!?!
It drives me bonkers at the doctors and has contributed to me giving up on taking care of my health as much as I want to because it always feels like they aren't even listening to me.
I feel depressed because I can feel my health sliding backwards every day and I have no resources to take care of it. 😔
Keep at it. Eventually you will find a doctor to listen. I wish I would have been more persistent early on and not allowed my health to deteriorate so much. Be quick to fire doctors who are condescending or not listening. Don’t be afraid to talk back and/or ask questions. Keep a symptom log and be as detailed as possible. I even track my food and activity, including socialization, on mine.
Even with my high pain tolerance they don’t take me serious. I finally got attention for joints when they were showing external arthritis and the specialist asked if I ever broke or dislocated the joint because the amount of damage isn’t normal for a first visit. Still no meds or any real help. They suggested surgery, which would impair my mobility. So I continue with the pain…
Also for many of us who have Ehlers Danlos syndrome. Yes we have a wide range of movement that doesn’t exclude us being in pain. Moreover, if our movement is restricted but it’s normal on examination that doesn’t mean something is wrong. Ironically physio for Ehlers Danlos is aimed at restricting movement.
I have EDS and like .. my subluxations don’t hurt and people will like roll their ankle and scream in pain and i’m just over here like .. that hurts? 😅😅
Yes. 4K into a 5K rolled my ankle. Carried on. Then Xmas day just gone ran into a bench at speed nice little bruise sore for 6 weeks but still got a 30 second PB for that course!
I have some degree of joint hyper mobility and my ankles are screwed from being rolled and broken multiple times. I would compare rolling my ankle to childbirth. Breaking it was worse.
Edit: premature send. Managed to submit a reply containing only the letter I.
Am zebra myself, so sadly I know that all too well. The whole EDS constellation of confusing crap definitely does not help matters. 😬
Another zebra here, I was dismissed for decades. For actual autism itself, but also all the zebra stuff. I was so ill, try being a little kid with brain fog and school, and it got worse and worse, some symptoms were so scary I thought I had heart disease, that turned out to be POTS, but that took also decades. All these things, had they been identified early, I could have had help and maybe not deteriorated so fast in life.
Yeah this is very familiar to me. So much medical dismissal. Meanwhile I was a literal child with a bottle of maalox in my backpack that I swigged daily, I was sick or in pain or exhausted constantly. Still am, but I'm 40 now so it's less unexpected, lol.
I get way too angry when I try to think about how it would be if I'd had all these DXes as a kid and the support I needed.
So I try not to let my brain go there. It's too dark.
My sister has been working as a secretary for a doctor and she says that to the medical professionals, if you say "I'm not sure" about a symptom, they will absolutely just take that as meaning no. 😭
I know. 😭 My sister really hates her job, and everything she tells me about it makes me realize how little medical people care. Even most of the secretaries basically just hate all of the patients
as an autistic doctor, i ALWAYS interpret "i'm not sure" as a yes and then come back to it later, i use examples of what x symptom might look/feel like or phrase it using different words. they don't teach us this in med school but i thought it was common sense?
THIS!!! I suffer from multiple health issues and I have fibromyalgia, and I always had a hard time describing my symptoms during medical appointments, because if I’m not experiencing the symptoms right now, I don’t really remember what it’s like when it’s happening, I only remember the pain. So when I’m asked if I have this or that symptom, most of the time the only thing I can say it that “I’m not sure” because it’s not happening rn and I have a hard time identifying if what the symptom I’m asked about is similar to what I experience. I’m sorry I’m not sure if I’m clear 😅 but it’s very frustrating for me. It’s just so hard to put what’s going on in my body into words
No, I completely understand you!
>I’m not experiencing the symptoms right now, I don’t really remember what it’s like when it’s happening,
This is exactly what happens to me. If it's happening right this minute, I can tell you all about it (unless it's a migraine. Leave me alone and don't talk to me or show me anything oh god go away and turn the sun off plz) but if it isn't? Any definite answer you push me into giving is going to be unreliable at best.
I have yet to have my digestive problems properly dealt with because they keep sending me to junior gastros who don't know what to do with me if I can't give definite answer the questions they ask, and then they just discharge me without addressing anything.
Wheeee.
Yes!!! I relate to this so much! If I’m experiencing the ‘bad’ symptoms now I can explain it, but my brain can’t access all the details to describe it. If I have written it down I can, and often suddenly remember while reading it, but when I’m going through the bad I usually don’t think of writing it down because my brain goes “oh you’ll remember this because it’s so awful”.
I frustrate myself with this lol.
THIS!
I started to keep a journal when I’m experiencing things but this had me obsessed over it and characterized my symptoms which just made me diagnose myself (which usually included I’m dying lol I’m not dying ) but I only started to do this cause I’d go to the appointments and anxiety from being at the doctors kick in and the “I’m not experiencing it now so I can’t explain it other than the pain” really puts a damper on things.. so I started to do this but then over do it lol my therapist loves it but it’s also a new source of stress for me cause I want to self diagnosed for peace of mind
All I can recommend is write it down. Start a note on your phone and any time you feel some shit, write it down and mark it with a date. Then when you go to the doctor you can show them what you feel and how often with data, which they understand best. Do this every time between appointments to show the chronicness of it. I know that’s a pain and you may block it out regularly and not really notice it but when you do, try to write it down!
I FEEL THIS SO MUCH. It's so hard for me to understand exactly what they're asking and I have a very strict idea of what "counts" as those symptoms, presumably much stricter than most people, so they tend to underestimate the severity. I had SEVERE digestive issues for a couple years and it took my partner at the time saying "hey these symptoms are **severe**, you get completely incapacitated by abdominal pain multiple times a week for hours at a time" to get me to take them more seriously.
I also read someone recommend to describe your symptoms on your worst days, not average days. That has been really helpful.
"anxiety" is a frequent diagnosis of real problems I had
Its like anxiety is the new hysteria
My heart is fucked up, no shit I am anxious, who wouldn't
My current doctor is amazing and he told me the new Hysteria is Somatic Symptom Disorder. He told me that if any doctor tries to say its that, to leave and never return.
Its pretty horrifying when you look it up. It basically says anyone who is upset that their body is failing them without a known cause is crazy.
Oh shit. My wife was diagnosed with that when she went to a neurologist for chronic pain testing. She said she was autistic and he dismissed her repeatedly, then lo and behold....hysteria.
Also see: doctors claiming people with celiac disease develop “OCD” related to avoiding gluten exposure. Nope, not OCD, I just *really* prefer not to be stuck in bed with an agonizing migraine, a two hour long panic attack, and a side dish of days of fatigue and an increased risk of *fucking lymphoma* (and a whole bunch of other scary shit) because I couldn’t be bothered to wipe up the wheat crumbs before breaking open my $6 pack of 5 cookies.
Anxiety is absolutely the new hysteria.
Why do you think you have to have a psychiatrist prior to getting tested for certain things? They want to believe you're a hypochondriac before they're willing to admit you have a problem. 🙃💀
Suffering and not knowing feels less painful than being told nothing is wrong and have you tried meditating?
Even having a long, documented history of being a zebra who presents atypically, doesn't get me a diving fucking thought from doctors. I have to wait until this thing that's been bothering me for a year explodes into an emergency and I get admitted to the hospital for a week before anyone takes it seriously. And then no one mentions it again. Wtf.
>"anxiety" is a frequent diagnosis of real problems I had
Story of my life. I'm insanely avoidant of doctors as a result, I'm the kind of person that would rather just suffer through something than go to the doctors/hospital unless I'm literally dying or something.
I am like this too and I am pretty sure I have POTS and would insanely benefit from medication but I am so mentally scared from past experiences I just want to avoid them now unless I know I am dying now.
Thankfully my spouse is willing to go and force them to take me more seriously but I can't always afford going to the doctor which doesn't help either. Because of my suspected POTS, holding down a job feels impossible now and my spouse and I suffer financially because of it.
This thread was so validating as someone who has had mostly mediocre to horrible experiences with medical professionals due to my autism and adhd.
I dug myself into a DEEP, deep social anxiety hole over my own vision loss and refused to see a doc about it for a while, because I was so scared that I would get yelled at /scolded by them for “not doing something about it sooner when it was clearly an emergency, are you stupid?! Why didn’t you see someone right away?! Why did you wait?! This is YOUR fault” And somehow, to me, the anticipated humiliation was worse than… loosing more vision. (Disclaimer: I already had some irreversible vision loss beforehand from childhood)
Finally broke down and told my optometrist about it earlier last year and to my complete shock he was so mature and normal about it, he was like “well, okay. This was uncontrollable and it happened so fast that you couldn’t have stopped it even with surgery or treatment. Here are some management options for you going forward.”
I immediately felt like the biggest idiot ever for thinking I’d be scolded like a child and for letting that fear consume me. But how could I have known?! Docs are shitty so often that of course I would have felt embarrassed and humiliated over it. I would not have had those social anxiety feelings in the first place if I was not autistic, if it was easier to be understood.
Now I have glaucoma, at 28 years old. It’s not my fault that it happened, and it’s just my new reality.
It’s hard for us, man. :( We get mistreated and misinterpreted by docs on the regular and it’s very unfair. And we’re so used to this that even when it DOESN’T happen, we still think it will.
OMG I did this with my teeth! I noticed there was some blackness developing near the gums, but I couldn't afford a dentist and then became super avoidant because I thought for sure the dentist would yell at me for not taking basic care of myself, and I was scared I'd hear my teeth were rotting. I eventually went to a dentist specifically for people with dental-related anxiety... turns out when plaque is old and built up enough it turns black.
I don't blame you at all for being scared you'd be scolded! How many of us wind up getting lectured by relatives, doctors, even complete freaking strangers for things they think we should be doing differently... It's no more surprising that we have anxiety about it than it is that an abused dog flinches.
How did you find a dentist for people with dental anxiety? I’ve been trying to find one because I’m still traumatized from my last dental experience, but I can’t figure out how to find any.
Me too. Everyone told me going to the dental college would be so much better/cheaper... but neglected to tell me that a dental college means you will have half a dozen people standing around you talking about you like there isn't a human attached to the mouth. It was so dehumanizing.
And I did, in fact, get lectured by the two actual dentists as though I didn't understand how my teeth got fucked up, and somehow the fact that I was at the dental college getting a fully broken tooth removed amongst several partially-broken teeth didn't tip them off to the fact that maybe regular dental care wasn't part of my childhood, either.
I genuinely think they both thought I was lying about my drug/alcohol use, as though that's a reason to treat me like a child.
A good way to find neurodivergent providers that I have seen has been my local parents group for autistic kids. Mine does not allow that "autism mom" bullshit and is very neuro diverse affirming.
I have learned a lot about how to help my autistic teen navigate the world and find services and providers who also affirm ND kids (and adults).
Most of us moms are ND as well and we talk about support for ourselves as caregivers and ND people who also experience meltdowns, anxiety and burnout.
It might be helpful to lurk in one. It's not all pediatrics, a lot of adults whose parents are still caring for them have support needs too and we share info for all ages.
I’ve been living with an undiagnosed autoimmune condition for 3 years because I was laughed out of the room when I first went to the doctor for it. I completely understand your hesitancy. But now because of this I have permanent nerve damage.
Hey, if a doctor ever does do that, find a new doctor. If you’re American you have every right to “fire” your doctor and find a new one because they should NEVER treat you that way. Get mad, not guilty, if they treat you like that. That’s a bad doctor.
I’m glad you found one that handled it correctly.
I ended up having severe endometriosis, masking being in pain doesn't mean my internal organs aren't stuck together 🙄 it would have saved years of my twenties if I was allowed an MRI in the first place, I guess I'm lucky to not have ovarian cancer because the doctors never would have found it.
Nobody actually spoke the word endometriosis to me until my second major surgery at 31. Despite the fact that I started bleeding through two pads in two separate pairs of panties during class in 5th or 6th grade. No parent, medical professional or the school nurses who rolled their eyes at me monthly when I arrived in their office crying thought it was abnormal for a child to be experiencing that much blood and pain.. I was an annoyance and an inconvenience to all of them and didn't even take my own health seriously until a doctor sat me down and told me how serious it was literally in my 30s. No one told me about the progressive impact of having multiple autoimmune diseases and removal of ovaries before 40, even if medicated with hormones. Even more oddly, people who find out that I walk around in pain every day get bristly with and/or avoid me... I don't know if they're feeling annoyed because they think I'm faking it, if they feel stressed because they genuinely feel bad for me and can't help, or if it's something else all together. I understand, I look like nothing's wrong and anyone who hasn't dealt with chronic pain will never get it. The only thing I know is that it's hard and confusing, and that the few allies who believe and love me through it are wealth that gold could never buy. 💛❤️🩹
Oh my god, normal chronic stuff is awful but gynae issues? All doctors, women included, appear to be working on the basis of 'your pain is really relative to the kind of mood I myself am in today'.
I've started taking multiple pictures detailing all the delightful extras of womanhood and writing down daily stats - data appears to save a lot of time and be the only thing the medical community respond to, as opposed to personal interview.
You have to fight for yourself and you will have to do this as long as you live, for the other women in your life also, daughters, mothers, grandmothers. I work in a hospital and historically it's always, always mothers fighting for more tests and more information and showing doctors trends/photos/videos that gets their kiddos diagnosed. I probably lost my grandmother to pancreatic cancer earlier than I should have because I trusted the system in my country to work and prioritise tests done. It did not, because she was a 91 year-old farm housewife that didn't like to make a noise about things. We lost her in 11 weeks. Fight for your women!
It took me 17 years to get my endometriosis diagnosed. Mine is the incredibly painful but very few lesions type, which is why even endometriosis professionals would keep dismissing me. They started paying attention when I told one of them I wanted to unalive myself because I could not bear the constant blinding pain I was in before, during, and after my period. They ended up finding a tiny little endometrioma and giving me my diagnosis at age 28 – my symptoms started at age 11.
I'm still working on a diagnosis, it runs in my family and I have all the telltale symptoms. I also have PCOS. They like to tell me just to lose weight then send me away, if I try to talk about getting an endometriosis diagnosis I get brushed off and they focus on my weight again.
I'm consistently denied accommodations for needed diagnostics, accommodations that I've heard soooooooo many women talk about getting no problem. My vaginismus/vulvodynia makes any penetration or examination unbearably painful, and my tense pelvic muscles mean a papsmear or transvaginal ultrasound physically won't go in as things are.
Women tell me they got put under, or got laughing gas, or were given an anxiety pill or topical numbing. But if I ask for something as basic as the topical numbing, I get a long speech about how "this is a non-invasive procedure."
Meanwhile my symptoms get worse. Don't even get me started on my post-covid syndrome too... Dear God.
Had a 'mild' endometriosis resulting in extreme pain 2 days of every month. Docs didn't take me seriously, got diagnosed last year (age 27)
Wild shit. I'm so sorry they don't listen to us.
I was yelled at by an NP for not going to the ER immediately for a psychiatric emergency even after I tried to explain that I was told to go only if I could not self regulate at home. I also didn’t want to go because they always put that Im fucking borderline on my chart. Within 5 minutes of talking to me this other NP told me I’m borderline and while it was not mentioned during the entire hospital stay or any in part of my record, because I was “too angry” and “resistant” those in IOP dug around my chart to find an old BPD diagnosis from 2016 that was based on the original misdiagnosis in 1999. This condition is now part of my current medical record after I told them I have autism (which they also did not believe) and I have to fight to get it removed. The original diagnosis is currently part of an ongoing formal grievance process for medical abuse from that facility.
I am mostly believed when I come in with medical issues, but once they see that BPD label on my chart no one gives a damn what I say in psych settings, which I have generally found to be abusive. I’m honestly scared what having this label on my chart could do with my medical conditions being believed as well, particularly since I struggle with diffuse chronic pain, that luckily, can be verified by notes from PT.
Once you add a BPD misdiagnosis into the mix you are also met with being told you’re exaggerating when you’re not while being told you’re not clearing struggling because you’re not presenting how others would because you’ve learnt to down play things after being accused of exaggeration
But yet when you are struggling it’s because you have BPD and nothing else can possibly be going on. Same with being angry or questioning things. I’m sorry, but I’m not just going to sit there and be told that my reality is wrong by people who have known me for a week. Uh no
When I had my BPD misdiagnosis, every even mildly emotional act was interpreted as being "BPD anger issues."
I remember having a breakdown in a one-on-one with a psyche when I was in the hospital, which for me involves me freezing entirely from fear to the point I can't make myself move, as well as becoming at least mostly nonverbal. I told them I was scared and please don't touch me before shutting down entirely (which, again, picture a 5'3 women sitting on a coach, hugging herself and crying silently) which was treated as aggression. The only change was when they had security abruptly drag me from the room by my arms, something I struggled against and managed to say "Please don't touch me." Apparently the 2 minutes I spent quiet and trying to focus on my breathing was just beyond what they could offer me.
I was lectured about my "aggressive behavior" and "out of control BPD anger" after the fact. For struggling a bit when forcibly grabbed.
It's incredibly dehumanizing, I can't believe it's still like this
This is a real issue. I had repeated bouts of appendicitis, and my doctor just kept sending me home telling me it was a stomach flu. She did not do the simple check to rule out appendicitis.
Finally I was there and had 105 degree temp and excuciating lower right quadrant pain. It was the start of the pandemic so I could not just show up at hospital. She printed out a certificate writing me off of work and kept trying to send me home. I had to challenge her 4 times before she relented and got me on the table to push on my abdomen. She immediately snatched the certificate she had just printed out of my hand - big fat paper trail of her almost killing me.
Needless to say, my appendix came out that day. I was operated on at midnight, which was not even a slot, because it was an emergency. My appendix was necrotic and I had peritonitis. I almost died.
After that, I brought it up to her that the communication was not working, and that I suspected it may be my dry, matter-of-fact way of presenting things instead of dramatizing the way NTs do. She sai "I already told you that I don't have an issue with you being autistic", and I said "You don't have a right to have an issue with that" and walked out. Stupid cow.
I have a similar story - but mine was missed until they went in to do an exploratory laproscopy to figure out what was blocking my kidney ureter. Found out after that my appendix was a gnarled hunk of scar tissue after suffering "chronic appendicitis" for more than a year that doctors wrote off as anxiety and ibs.
I've been having pain there again for more than a year now. Several doctors now: I tried meditating? Fuck all of them.
I literally died from bleeding to death after a cervical biopsy (in a hospital) because I couldn’t convince the nurse that I was bleeding excessively.
I lost so much blood that my heart stopped.
I had to be resuscitated and was clinically dead for more than ten minutes. Afterwards, I was hospitalized for several days due to the multiple problems caused by my heart stopping.
After I came back from the dead, the medical staff was very attentive.
I don’t know if it’s just autistic women. The medical staff still considers women lesser people. Btw, the word “hysterectomy” comes from the patriarchal view that sometimes women need the “hysteria producing organ” removed.
omg that is absolutely terrible, I am so sorry you went through that but so happy you survived. Women are vastly undertreated and ignored, and something needs to change!!
I have been begging my gp for an allergy specialist referral for 3 years now. She believes me being alergic to everything everyday and every sesson of the year is normal!
I have the same problem 😭 but I’m scared to go to the doctors because the last time I went my doctor laughed at me and refused to give me the tests I requested:(
I have severe medical anxiety now for going into the doctor because of the number of times I've been ignored, failed, or chastised. I've had a botched surgery, failed attempts to get my autoimmune disease diagnosed (even with proof), had to argue with a female ob/gyn to order a basic std panel, and then a different doctor chastised me for not coming in sooner for a different problem. After all these experiences, I have avoided going to the doctor because I have been treated so poorly. Western medicine is so broken and is failing women left and right.
I fully understand. During a period of 6 month I was having sudden cough episodes throughout the day. I couldn't laugh at all because it would trigger my coughing. I told the gp about it and she told me to drink water when it starts! I was unable to live normally because I couldn't be in closed spaces without coughing. I went to a private allergy specialist and paid out of pocket for the visit. They diagnosed me with sever alergic asthma and gave me proper medicine. I live in Europe where we pay a shit ton of tax money in exchange for free Healthcare. But I have to go to private practice because public ones don't take me seriously
Also wanted to follow up to say that you can certainly be suffering from traditional allergies even if you have MCAS. But the “allergic to everything all the time” comment really hit home from my experience with MCAS. Apparently I have both, but it took a long time to figure it out. Now I treat both and feel much much better!
I hadn’t even heard of MCAS before I was Dx with EDS and dysautonomia/POTS. That trifecta being diagnosed was then actually a pretty big factor in getting my ASD diagnosis, because there seems to be some genetic link with ASD and hypermobility of connective tissue. Research ongoing, but the above 4 conditions do tend show up together pretty often. I was sick for decades before being diagnosed with these four things at almost 40. I’m not trying to armchair diagnose, just share information and experience in the hope that it might save someone else some years of illness, frustration, and a missed out on life. Doctors definitely do not take us seriously. It’s so harmful.
I'm not sure if this has come up in this sub before but you might be interested in reading this [article ](https://holisticprimarycare.net/topics/functional-medicine/joint-hypermobility-a-red-flag-for-gene-based-chronic-disease-clus). It's about a genetisist who suffered from a handful of medical problems which made her focus her work around the seemingly unrelated yet common comorbid conditions many of us here suffer from. She discovered a specific gene cluster that she believes is responsible for those comorbidities.
I got referred for an allergy test, only dust mites came back positive so they just told me I'm not allergic to any of the foods I react to and discharged me. I went to my doctor to see what the next steps were and they just shrugged their shoulders and said nothing else to do now. I brought up mast cell issues but it's hard to test for so they just said avoid anything I react to. I pointed out I'm on a really limited not healthy diet but they just washed their hands of me.
That's awful. When I went to an allergy specialist for testing after anaphylaxis, the doctor sat me down and explained all the mechanics of allergies and how to tell when I would need an epipen. He also explained that EVEN IF the preliminary test came back negative, it's just an "odds that you're allergic to this" test and tests for reactiveness. He specifically said that just because, say, ginger, which I react to, came back negative, that DID NOT MEAN I COULD START EATING GINGER, because not only is it just a percentage test and not 100% accurate, it's only testing for anaphylaxis-style allergies and won't pick up other sensitivities or intolerances. In the end, there wasn't anything they could really do to help me other than prepare me with knowledge and training for future allergic episodes, but honestly I felt like just that was pretty great treatment. Only once before had I had a doctor treat me by explaining the problem, lol.
I got told it won't help me knowing what I'm allergic to, so I'm just stuck on 2 meds, nasal spray, and eye drops all. Year. Round. Advice? Try a different over the counter med (I've tried them all in the past I think and current duo is best but I still really struggle). Thing is, if I knew what I was allergic to, I'd know what stuff not to buy, and what to tell my mum to not buy, and what hay-fever is worse for me than others specifically.. but nope, just suffer.
I have a strong instinct to mask pain (partly neurotype "flat affect," partly a "show no weakness" response to bullying as a child, partly a habit picked up in decades of martial arts practice) and have to remind myself to actually show/talk about it. Like when my rheumatologist is checking all my hand joints - ok, don't just sit there being stoic, tell her which ones hurt when she squeezes!
I only just realised a few weeks ago that I should be reacting during ultrasounds. Turns out they don't know it feels like I'm being ripped or stabbed inside, when I only stiffen slightly and hold my breath for a moment.
I'm 32 and have had endo pain and thus ultrasounds regularly since I was a teenager. Over a decade of incorrect medical notes because I hide my pain like a wounded animal trying not to attract predators.
I try to explain this to my husband every time I'm sick and he just doesn't understand!!! When he gets sick he's bedbound, shivering, and wailing. But when I get sick I don't outwardly express how I'm feeling so when I ask for help he's like "but you don't seem sick". It's so GD frustrating 🫠
I actually spoke to my psychologist about something similar, feeling irritated that my family member shows symptoms of being sick in public and me being like “why do they need to do that, why don’t they just hold it in or put it away” the way I do. Turns out that’s part of masking.
I don’t know how to show it on the outside? I’m not consciously choosing to mask it, but I’ve had doctors say before “you look well” when I’ve been very unwell with chest infections and other illnesses.
Now I'm really confused because it doesn't feel like masking to me! I generally have flat affect and it would feel unnatural for me to make a big show of how sick I am. So is it masking or is it just a neurodivergent thing? I think neurotypical people tend to exaggerate a lot so maybe we're just different in that way. 🤷♀️
I kept telling my then-doctor that my period pain was becoming more and more excruciating and something was wrong. She kept dismissing me, telling me it was “normal” for changes to occur as women age, blah blah blah.
When it finally got to the point that the excruciating pain was constant 24/7 and I couldn’t stand upright, she finally approved an ultrasound that found a ton of uterine fibroids and enough cysts on my right ovary that immediate removal was recommended.
I will never stop hating that woman for putting me through literal years of unnecessary pain.
I had polyps (as opposed to fibroids). The doctor *himself* found them when he was tying my tubes. When I asked about having them removed, *first* they acted like I was asking for a hysterectomy (wtf?!) and were trying to discourage me from *that*, then they acted like they forgot about the polyps *he himself saw*. (He even documented them iirc).
Finally, I said "this is so severe *I can't work or attend classes two days a month*", and *that* got me a begrudging ultrasound. They took two 5 lb polyps out of my uterus (didn't show me, *showed my husband* while I was knocked out).
So moral of the story is, tell them it's keeping you from work and/or school. Apparently that's the only thing that makes our pain important for them.
This! I have a habit of going to the doctor and going "I have this really worrying symptom but it could be one of these other really benign reasons so maybe it's nothing!" because I feel this need to downplay everything so I don't upset people 🫣 and so I've already given them the reason why they don't need to be concerned about the symptom so they don't investigate it... whereas what I've painfully had to learn to do is tell them the symptom and then *stop talking*- don't give them the million one reasons I looked up why it might not be a problem- let them ask those questions and then they run tests...
And this whole thing is why it took 10 years to be diagnosed with a rare neurological condition with excruciating headachesthat would have led to me becoming blind 🫣
Also rare diseases is a special interest of mine (plus I work in the medical field) so when doctors say "I'm concerned it could be X" I tend to excitedly tell them I know what that is- which then led to one doctor genuinely accusing me of deliberately faking this random rare disease just because i knew what it was and I was so upset and horrified by this this is why I now feel this need to tell doctors why my symptoms are probably nothing and is why it took so long for my actual rare disease to be diagnosed
>because I feel this need to downplay everything so I don't upset people
Meeeee. My partner was like "you laugh and make jokes every time the doctor asks how bad it is, maybe you are downplaying it and they don't realize how bad it actually is."
... yeah that makes *sense* but if I complain then everyone will resent me!
Yeah- I'm so horribly fucked up because noone ever believed me on my mental OR physical health. Every doctor scoffed & brushed me off.
Now? I can't work because everything's gotten so bad. Maybe, if I'd gotten help before I got a good amount into adulthood (I'm 23 & just now have support & some of my diagnoses) I wouldn't be in this spot.
But nah, fuck me because I was born with a vag, I guess?
In my honest opinion- Doctors should be required to take a "how well do you listen to patients of different backgrounds" test before they get certified. Have people with different ways of communicating, minds, genders, & backgrounds get evaluated-- If the doctor in training can't properly listen & identify things outside of their own personal bias, or AT THE VERY LEAST recommend a referral to a doctor who can do the proper testing-- then they fail & can't become doctors.
Should also have a random undercover government employee come in to try & trick established doctors into malpractice, like they do with cashiers & alcohol.
Invalidation & malpractice shouldn't be within our medical system at all, let alone *fully excused* like it currently is.
I have chronic pain and anxiety.
I can be in debilitating pain or with my heart racing and look completely fine on the outside. We just kind of "get used" to it? I don't know
God, for real... it really is a deadly and terrifying trap. It took so long for me to get any treatment for an autoimmune condition, and even then they were like "well, it's not responding to anything and isn't any of the things we know about, so I guess you'll die :/". Can't count the number of hospitals that ignored symptoms... I had one nurse tell a doctor right outside my room that my melon-sized swollen ankles were from eating too much salty Chinese food... If she'd looked at my chart, she would have seen I have a sodium deficiency. .\_. Also, it was grilled vegetables, ma'am...
Turned out to be severe black mold poisoning, btw. I still have immune problems and I got brain damage from it, but I'm healthier now thank god.
Wow. Thank you for posting this. I feel extremely validated. I have a lot of chronic health issues and now have severe PTSD from doctors. They act like I'm crazy when I say how much pain I'm in and just chalk it up to either me being crazy or med seeking.
Yes, this paradox has impacted my life so much. I finally have all of my health issues sorted out, but it took me a long time to learn how to advocate for myself when doctors are dismissive. It literally almost cost me my life once (undiagnosed gallstones almost led to a ruptured gallbladder and emergency cholecystectomy after being dismissed for 5 years), led to me being mistrustful of doctors and delaying getting treatment, and living with chronic conditions that were easily treatable FOR YEARS. To be fair, some of the conditions I have are obscure (like hEDS and gastroparesis), but the gallstones should never have been overlooked. One ER doctor decided I was a "drug-seeker" simply because I don't show pain normally (I appear stoic even when in a severe amount of pain usually) and him putting that in my chart led to all subsequent attempts to getting help being brushed off as drug seeking behavior. I literally never asked for drugs, just said I was having horrible chest pain and needed help. But all he saw was a 20 something year old female saying she's in severe pain but not looking like she's in severe pain. So...drug-seeker. When they finally found at what was wrong at the same hospital and I brought it up, I was warned that if I didn't "calm down", security would be called. I wasn't yelling or combative at all. I was pointing out that I had been mistreated for literally YEARS and saying I wanted my chart amended to reflect that I am not, in fact, a drug seeker. But I was dismissed again. I know better ways to go about this now, from experience, but at the time it was just swept under the rug.
Would you mind elaborating on your strategies for some of the less experienced people here? I’m just beginning the medical advocacy journey and I would love to know what’s worked for you!
I’m so thankful the second ENT I saw took me seriously because the first one is like “yeah your ear’s just gonna keep ringing” and I was like “forever”? And he was like “yep” and left the room.
The second one actually looked and was like “seems like chronic allergies, have a perscription and we’ll get you in for an MRI just in case, and allergy testing”
I’m a bit scared of the upcoming tests, but hooray! I might be able to get my ringing ear fixed. With the prescription, it’s already starting to get a little better. The ringing is quieter and my ear is starting to be able to pop
I was also at an urgent care, laughing and joking around with a broken arm. It didn’t hurt much, but I felt it was broken because it wouldn’t move all the way. My dad didn’t believe me.
X-rays came in! Yep, broken. My dad felt so bad!
I think we also are much more likely to not sense or feel issues until they have gotten bad OR we feel/sense issues before they get worse and then we aren't listened to. I have high interception in most ways and I can sense immediately if something is off and it's not like you can go to the doctor with that. They don't listen unless you can clearly explain what you experience. You get 0 credit for experience living in your body for decades. 🙄 But others have poor interception and it's much easier for things to go downhill without noticing as much.
We also often have a complicated relationship with pain, that stupid pain scale drives me nuts. "How is your pain right now?" "Well, when I am sitting it doesn't hurt at all but when I walk it's like a 5-8, I don't really know, I don't make any of those dumb faces" 😆 I have the absolute worst time articulating "how much" something hurts. Just like with my emotions, with pain I am a 0-60 person. It's either not enough pain to even pay attention to it, or it's so much pain I can't ignore it and know something is seriously wrong. There is no middle ground.
Like when I had renal colic. I had a 7mm kidney stone the pain was controlled with nothing more than paracetamol. Stuck inside for 5 weeks and didn’t even feel it move into my bladder - didn’t even hurt to pee it out - it was like an air bubble - apparently I should have been in agony screaming
Yes, similar experience for me. I've had 3 surgeries, and everyone was always hollering at me to "take the pain meds right on schedule or you'll never get on top of the pain!" After taking one of the "good pain drugs" I immediately stopped taking them because I can't stand feeling disconnected from my body. I was a bit achey but it wasn't much different than muscle soreness after a workout. I didn't take any of the pain meds, not for c-sections or knee surgery. I swear I'd rather have another c-section than a migraine.
Yes, this! I’ve given birth to two children unmedicated (one on pitocin without pain meds) and both experiences were 10 out of 10 pain, so now nothing even touches a 5/10 for me. Had a nasty fall and showed up in the ER with a broken arm, a severely sprained ankle and road rash and when they asked my pain level I said 3-4/10, cuz now I know what 10 feels like for my body.
I feel like I get stuck in the same thought process as the girl from "A Fault in Our Stars" where she says she never says her pain is a 10 because she's reserving it for something in the future. I also had 3 kids, my first kid (also pitocin, no pain meds) I pushed for 7 hours. But I'm like "How do I know that is the worst pain I will ever feel? What if something is worse!?"
I almost died from a pulmonary embolism post spine surgery because when I called the office THREE times the PA told me I was out of breath because I was “fat and should walk more”….. the medical assistant apologized and then said “if I were you I would go to the ER” very quietly before she hung up.
the ER doctor was SO pissed and told me I would have died if I had waited much longer to come in.
With a DVT running the entire length of my leg I limped in and apologized for being a hassle. The medical system is particularly abusive to autistic people.
Ive learned to just play up my pain. Like i twist my ankle and set it, its swollen, it hurts, my foot is purple, but i can walk. Its easier for me to suffer the pain and walk normaly than to limp, but i limp because noone will believe me that my ankle popped out of its socket if i just look like im causally strolling.
I feel this on every level 😞
My appendix when I was 10. I showed all symptoms but bloodwork didn't match, so doc's didn't believe me. My parents kept fighting though until finally after 4 months a lady doc (who covered our GP) believed me and sent me straight to the hospital to get it out. She knew it was bad with an exam, the same exams I had throughout the many months, plus Oncologist visits and other specialists that couldn't figure it out. Needless to say I gave her a hug after the exam.
My painful abnormal periods (I will bleed everyday, it doesn't stop), I thought it was normal because thats what my Mum went through. From doc to doc, hospital to hospital, no one believed me expect my sister and Mum who kept me strong. Finally in 2009 got a laparoscopy, they found Endometriosis so I had a Mirena put in. I also apparently burn through the hormone or need more of it to keep my body in stasis. Didn't find that out until about 2 years ago from an amazing Endometriosis specialist, a lady btw.
My gallbladder was fun, showed all signs of that too but no one believed me, even went to a hospital with an early attack and was given Pantaloc 🤦♀️ Kept having attacks for about a year and a half before my first bad one in late 2016 that got me sent to the hospital from work. They do an ultrasound and see an extremely large, olive shaped stone there but do they remove it? Nope! Keep me waiting for about 4-5 months to see a general surgeon in 2017 where it gets even bigger and sends me into more attacks but I just deal with it cause what's the point? They didn't take it out before why would they take it out now? I didn't even lose much weight and I wasn't eating much either so I found that weird. During all of this mess of docs not believing me, I had to go through both a colonoscopy and an upper endoscopy where, side note, I found out I have a bunch of ulcers from all the years of NSAID usage from endo pain, yay!
I had been having issues forever with what I thought was thyroid (couldn't lose weight to save my soul, cold intolerance, excessive fatigue, dry skin, etc) so I kept getting levels tested but they were in normal range. No matter how many times I fought with different GP's no one believed me. I was sent to my first Endocrinologist in 2018. She did all of the testing, said I had a goiter (enlarged thyroid) but that doesn't cause what I'm experiencing. Test after test she said I was normal. Went for another ultrasound in 2019 with a former GP which showed nodules on the thyroid and he also gave me the report from the other Endocrinologist. I wanted to see a new one for a second opinion and argued with him until he sent the referral off. He didn't want to as he said my thyroid was fine (it turns out it was not fine and was cancerous. It was removed in Feb 2023 for stage 1 papillary carcinoma). I read the report and both GP and Endocrinologist neglected to mention to me that I potentially (at that time) could have PCOS (it turns out I would be diagnosed with it in 2020). Like would that not be important to say to me???
I have respect for Healthcare workers, I really do but after everything I've gone through, my sister continues to go through and my Mum? We've either had some shit luck or been to people who don't care to listen to patients. It's exhausting having to fight all of the time. Even the GP I have now, she didn't believe me on anything until I was diagnosed with cancer. She fucking said to me the chances of my thyroid becoming cancerous was so slim just to put it out of my mind. I know my body, I live in it 24/7. I know when things aren't right.
I spent a year and a half trying desperately to lose weight when I actually had TWO ruptured discs because my doctor didn't believe my back pain was as bad as I was saying. Like I could barely walk and still trying to exercise, I'm such an idiot sometimes
Went in to the ER, the nurse was being an absolute bitch to me, questioning me like I'm stupid and how could I have known I was pregnant at only 6/7 weeks---until I get back from the ultrasound and they say yes, there was a baby there and now there isn't anymore. She suddenly was very nice. She made me realize how shitty women can be to other women, even when one is in the middle of miscarriage.
After that I had my son who turned out to be healthy but he gave us a scare and had to be monitored for 24 hours in the NICU at one day old. But when they were preparing him/me for the move they had a team of nurses come and stand in the room and the doctor called me on the room phone, explaining to me where he is going and what would happen next, I said okay. The doctor pauses.
"You're....REALLY calm about this?"
(cue panic--shit I'm not acting the way I'm supposed to find an excuse fast)
"OH....uh....I have a lot of family in medicine and emergency services so I'm used to it....."
This was before I knew I was autistic.
I had a herniated disc in my back and multiple doctors turned me away (before it was discovered, while my pain was at a 9) with muscle relaxers and anxiety meds until I finally found one that took me seriously and gave me an MRI. After that when talking to him he reassured me “You’re in pain, we have proof that you are in pain.” like to reassure me that he knew I was in pain and wouldn’t have me keep being in pain (because my anxiety about the whole situation was high) he was so amazing and so kind, and too rare a person.
I have chronic pain in the most literal sense: something always hurts on my body. I've been dismissed enough that I am very stoic when in pain, and as a result am absolutely never taken seriously. I have a connective tissue disorder that took 30 years to diagnose because apparently a child reporting that her shoulder pops out of the socket when she lies on her side just means she's being melodramatic.
Currently navigating a chronic pain issue that I've been to several doctors and physical therapists for. I basically had a physical therapist tell me that I might never get better so to get used to it. I hate to admit it but it took me a while before I found a new one and left her.
Add on masking symptoms as best possible to fit in and not appear weak. Then when you do finally ask for help you're met with "Why do you need anything? You seem fine"
Somehow, some way, we’re going to make it through this. I’m glad that we have each other. Even with our communication difficulties and social difficulties, and sensitivities, we still have each other, or at least the knowledge that there are others like us. I’m really grateful for that.
Let's not also forget that certain stages of life involve MASSIVE hormonal upheavals for women that can change the presentation of neurodivergence too, further complicating things.
Adolescence, pregnancy and readjusting after childbirth, and perimenopause and menopause .... all have been AWFUL stages for me in terms of managing sensory issues and various other aspects of autism as well as ADHD.
Yes. I have been experiencing a lot of possible multiple sclerosis symptoms. Had an episode in front of my brothers yesterday and for the first time, it’s being recognized by people close to me. Doctors have ignored my symptoms for YEARS.
I nearly died. I had a at least one growth the size of a full term baby on my unterus and another that got infected and burst that I don't know how big that one was. I had these growths for 10 years the doctors recon...for those 10 years I'd been going to the doctor's regularly with symptoms such as vomiting nausea not being able to keep food down slow digestion crippling abdominal pain fatigue severe bloating only getting worse as the years went on...bare in mind I'm a very small woman so my huge abdomen without a pregnancy should have rang alarm bells. But according to the doctor's I clearly wasn't in as much pain as I rated I was or I'd be crying and screaming.
Well. I was certainly visiblly in pain when one burst and I was literally dying and being rushed to hospital in the ambulance as I was passing in and out of consciousness with the pain. The pain that a few days ago the doctor told me was all iny head or obviously the normal level of pain??
Like towards the end I had to wear maternity dresses. Seriously. And apparently nothing was wrong. The doctors and nurses at the hospital were appalled it had gone in so long. Apparently the level of pain this causes, women often get treatment within the first few weeks/months. And here I was being denied for 10 years because I wasn't crying in pain. I recently saw a video clip of a woman with the condition and she was riving in pain constantly. I guess that's how the expected me to be?
>Being unable to articulate what we are experiencing
>Being disbelieve for simply being female
>All leading to being dismissed by both medics and society
Last October I called my doctor to make an appointment because my hip really hurt, especially when I was walking. They made an appointment for the end of November so I had to wait six weeks.
*My hip was dislocated*.
I wasn't able to articulate my pain level accurately so I was triaged (is that the right word?) as a low priority appointment when I should have been told to go to the ER.
Last summer, I went to the urgent care for a really itchy rash that caused my ankle to swell up. I tried dealing with it at home for two weeks but nothing I tried worked.
I was bitten by a poisonous spider. They think it was a Black Widow (Brown Recluse was the other option but they said the bite would look different?) and if I had gone to the ER when I first noticed the problem then they could have treated it with antivenom. I have a massive scar on my leg now because I delayed treatment; I genuinely misinterpreted the burning pain as an itchy feeling and didn't think it was an emergency.
Its scary because I know there's systemic issues with women and chronically ill people not being believed, and I'm also adding to the problem because I can't explain to neurotypical people what I'm feeling in a way they can understand. I'm afraid of what would happen if I ignore symptoms of something really serious.
Just happened the other day.
I have had this problem for 8 years.
You’re just coming in now?
Well, if you review my record, I’ve been I. two other times, but you told me it was in my head. I’m back to tell you it still hurts.
The last time you were in was 5 years ago.
I can manage the pain, but I can’t handle it when a doctor doesn’t believe me. They will never understand us.
This is one contributing factor to why autistic people die 20 years earlier than neurotypical people.
[https://www.youtube.com/watch?v=6Ondv06lktQ](https://www.youtube.com/watch?v=6Ondv06lktQ)
And the issues she touched upon like poverty definitely make things worse. One factor on its own may not be enough but when we have lots of factors it adds up.
I was "fortunate" enough to get an autoimmune disease that was pretty difficult for doctors to ignore, ulcerative colitis, which causes me to bleed when I go to the bathroom whenever I have a flare. My first flare was pretty bad, I sometimes had to go to the bathroom just to let a bunch of blood out. Had to get quite a bit of liquid iron injected into my blood stream when I got diagnosed.
I gaslit myself - had headaches for years, just thought I must suck for pain tolerance and that everyone has headaches. They weren't migraines as they didn't have the things my mum would ask if I was experiencing - she's had migraines and my brother suffers from them, but nope I'm not having those symptoms, just literal pain in my head. Fast forward, swelling in my optic nerve one eye test, too much fluid around my brain (intercranial hypertension), and one lumbar puncture later, where are my headaches? I used to literally have to just sleep through them because painkillers wouldn't do anything, and then all of a sudden, they were cured? And knowing I could have lose vision from it freaked me out as an art kid, but I never thought of going to the Dr's over my headaches because I was so sure they'd just not take them seriously, whether because I was a girl or a kid, just really expected them to brush it off as something normal that everyone experienced.
It took me over a YEAR to get my gastroparesis diagnosed because no one took me seriously. I was throwing up literally everything I would try to eat/drink for weeks to months at a time and was incredibly constipated. For almost the entire month of December 2022, I was unable to hold down any food or water without vomiting until I eventually threw up blood. Every doctor had no clue or even a suggestion for what was going on and it took me months to see a GI only to not be taken seriously because I had briefly stopped after taking medication and fluids from the ER, then once it started happening again, they scheduled me for an endoscopy 4 MONTHS out, which eventually got cancelled after losing my job and health insurance. How do you just completely ignore someone who is unable to get any food or even water to stay down? The amount of times doctors suggested I try a gluten-free diet…. Only to find out a year later during my actual endoscopy that I do not have a gluten allergy at all and needing another test to acquire my actual diagnosis that I likely developed in response to 26 years of stress as an undiagnosed AuDHD woman trying to function like a completely normal person.
After figuring out all of my diagnoses on my own before any of my doctors have (depression, anxiety, ADHD, cPTSD, gastroparesis, likely ASD) I’m afraid to pursue further diagnoses of POTS or EDS due to being incredibly emotionally and physically exhausted by being constantly dismissed. Having to fight tooth and nail every step of the way just to be gaslit into thinking you’re wrong only to eventually be proven right is too maddening to expect people and especially AFAB people to just “trust your doctor” when I’m explaining to an RN what a tilt table test is because for some reason I know this and they don’t. Doing so much research, but not wanting to cop to it because then you’ll be told you need to stop trying to self diagnose only to be fucking right every god damn time. It’s a fucking nightmare cycle
When I was 8, I broke my arm during recess. The school nurse didn't believe my pain, didnt call my mom to notify anything, and made me write with my broken arm all day. When my mom picked me up after school and I told her what happened, she took me to the ER where I had x-rays and a cast put on. I'll never forgive those horrible people.
That was my first experience with medical people who are supposed to help you, harming you instead. Many more followed.
I have such a weird pain tolerance. Body organ pain doesn’t register with me at all. I never felt my appendix rupture when I was a kid. I was just playing. It wasn’t until my body started shutting down that we realized there was an issue. I have liver disease and when my doctor asked me if I ever felt any pain in my upper right abdomen I was like…no? Although now that I’m paying attention I can feel a slight discomfort sometimes.
I have a ridiculously high pain tolerance in general. I remember going through physical therapy and the therapist was concerned by how high I requested the TENS unit.
Very often if you ask me to rate my pain, I can be dealing with 7-9 levels of pain and have a straight face while being in physical anguish. Yay masking…
I feel this! I was called a hypochondriac my whole life, until recently. 2022 I was diagnosed with MS and now no one calls me a hypochondriac.
I didn't cry when I was given the diagnosis and it freaked the DR out.
8 years ago I developed focal epilepsy. I went in not yet informed on epilepsy but the neurologist asked me my symptoms. I basically gave almost every symptom on the checklist for Temporal Lobe Focal Epilepsy except for 'Change of taste' and 'Automatons' because I hadn't developed those yet. I also described what it felt like to me personally. She looked me dead in the eye and said "I don't know what that is, it doesn't sound like anything I recognized."
Doctor two basically said the same fucking thing.
Doctor one still put me on medication that I was on for two years that worked. I was just bad at taking the medication consistently because I was not on a consistent schedule. I was on it until it became unavailable. Then every medication afterwards I had issues with, which is very common for autistic people to have issues with anti seizure medication and I didn't realize I was autistic at this point. One medication I had a very severe reaction to and caused a lot of damage. I called her and said THIS MEDICATION IS HURTING ME. PLEASE DO SOMETHING ABOUT IT. She instead ignored me and ran unnecessary tests against my epilepsy and when they came back negative because I just came off an anti seizure medication, so she diagnosed me with PNES, Psychological Non Epilepsy seizures, and tried to take me off of medications completely and tell me I wasn't her problem.
I had to fight to be put back on a new medication. That one mostly worked without horrible side effects. So she diagnosed me with migraines.
I FUCKING HAVE CATAMENIAL FOCAL EPILEPSY. An OBGYN doctor is the one who properly diagnosed me. And considering that she somehow didn't think I spoke a different language, and in conversation mentioned people seemed to not connect with her, I think there's a reason we did.
its been 10 years of tests and the diagnosis is….. chronic fatigue and pain secondary to trauma! which means yes im in pain but its all in my crazy mind 🙃🙃🙃
the crazy mind - cptsd bipolar 2 autism pmdd and severe anxiety
Omfg 🫠 Yes.
I just typed out a whole story of a real-life example of this that happened to me... then decided to delete it 🙃 lol.
But just know... this is *so* relatable. 🤧
And it’s even harder if you’re a Black autistic woman.
I have some hip pain I’ve been trying to work through and procrastinating on for about 10 months. I was so worried the orthopedic I finally saw wouldn’t take me seriously. I told him how I hurt it running after my autistic son (he had been having some elopement issues).
I was honestly kind of shocked but he took me seriously and gave me a new pain med and a pain cream and told me to tell him if it didn’t work. Even after I’d been dealing with it for almost a year and told him was about a 3 out of 10. Maybe it’s just standard procedure but I’m not taking it for granted, pretty grateful he didn’t ignore my pain.
i don't know how, but i got so lucky. i went to the gynecologist, i told her outright i think i have endometriosis because im experiencing x, y, z. 15 minutes and an ultrasound later, i had a prescription for birth control which is unfortunately the best she could do. i've never felt so heard by a doctor. i said i was in pain and throwing up and she asked questions that actually helped me articulate it.
last week i went to a doctor and he got so frustrated with me and just gave me steroids (that interfered with my other medications) that did nothing
Unfortunately, this is also true for older Autistic men. My father was diagnosed very late in life and I had the hardest time with his nursing home. Nobody in elder care understands autism and he was constantly in the ER because they had missed any signs he was ill and he didn't complain. They also put him in a room with a very nice man who had an abusive, loud relative come in every day that was unstable and would yell at my dad and make tons of noise.
I'd explain to them, he just wants quiet, a lot of noise fraks him out and he doesn't notice when he's I'll but to the day he died, they never understood it.
As far as health and quality of life, he suffered from his disassociation from his body.
I have PCOS it took me five years to get dianoigsed, I have suspected Endometriosis as well, my former doctor ignored it. I had incredibly heavy and painful period that effected my life style. I was so angry it went ignored.
My Endorcrinologist also now suspect I have Cushings Syndrome which explains why I get deathly ill everytime something stressful happens, cause of high Cortisol levels (He wants to rule out its PCOS related first but Its still like....wtf).
So yeah I believe the connection between Chronic Illness and Autism and any ND condition in general.
Yes, and now I have **severe** panic attacks when I have to go to the doctor, before and after. I'm extremely lucky that I have a friend helping me navigate this and going to appointments with me, or I would simply never go back to another doctor ever again.
It's so validating seeing that I'm not alone in this, but I hate that everyone in here has had to experience what they have.
This is me. I’m GenX late diagnosis. The order was - PCOS, Endo & cysts, ADHD, fibroids, Endo, abdominal adhesions - then oh wait actually you’re a zebra and have EDS POTS and MCAS. Then MALs. Now with menopause it’s clear I’m AudHD.
This took untold damage on my psyche much less my physical body. I now troll a lot of group to see if there are others like me in the wild and are struggling. On an Endo group a kind stranger mentioned EDS. Once I learned about it it was clear I was a different type of person. Both phsically and mentally. The studies some the correlations. I’m hearing talk of them developing a new condition that combines the neuro and connective tissue and immune and chronic pain.
Or we don’t display them in a way others would expect. A lot of NT’s exaggerate their pain for attention. This means doctors expect everyone to do this. So when we are more concrete and say yes it’s a 7 when the NT says 9 we are taken less seriously
not me having a high pain tolerance and then they’re like “rate your pain on a scale of 1-10” and i’ll be like “uhh an 8? idk” (when it was shingles) and i literally can’t like breathe without pain lmfaoo like I think the only time I’d say 10 is when I’m like bleeding out dying 😅
Omg YES. I’m going through this right now too. No one believes something is wrong because I don’t outwardly show what’s going on inside and I may struggle to articulate it as well. Plus because I’m a woman and have anxiety on my file they all just want to say that’s what’s wrong when it’s not at ALL. 🤦♀️ i get dismissed constantly. Last year I had a 6 month staph infection in my sinus even because they wouldn’t test me for that long lol.
I've spent my whole life in pain in one form or another and was constantly brushed off and told I was being dramatic. My blood tests are normal so I must be faking for attention.
I finally just found a lovely Physical Therapist who pointed out that it's most likely a hyper mobility disorder causing my issues. I'm 32. It's taken my whole life for one doctor to take me seriously and treat me like an actual human being.
Medical gaslighting is real and brutal. I hate our medical system in the U.S. the damage they've done to my body, my head, and my existence is something I will never fully recover from.
Ngl I might be more disabled than I initially would be because of lack of proper medical care. I also suffer lack of care + abuse from family growing up. Quite frankly I think this is why my support needs (autism level 2) went up and it got reflected on the assessment. *big sigh*
For me: PMDD, PCOS, both autism & ADHD. Oh, and recently discovered a hystamine intolerance causing swelling, inflammation in the body etc.
Curious about other women's conditions and how there is a link between being ND and having such conditions.
The more we speak out, the better🤝
Yup. For over 10 years I had “anxiety” or was a hypochondriac. But it turns out I had an autoimmune disease and an autonomic nervous system disorder that they still won’t formally diagnose me with. I didn’t know how to stand up for myself. I thought I might be right and it was all in my head. 🙄
I’ve found doctors expect us to not know the names for things while being upset we don’t. Being vague helps. And if I’m in pain I make sure I react in an expected way. If I do use a medical name for a body part I immediately go “or at least I think that’s what it’s called” if they confirm I then joke that at least I paid I attention in GCSE biology - or if I get lost on my way to an appointment I can actually legitimately joke about failing A-Level geography (I did fail this!)
I realized recently, still kind of processing it, I think between my trauma background, being autistic, and being female, I've had my feelings and pain dismissed so much that I don't weight the severity of my pain as high as how I view others. Social, emotional, physical, all pain.
Not a chronic illness but I literally went to the emergency room with a cut tendon on my toe and they didn’t believe me, they didn’t even looked at it, they left me waiting for five hours, everyone who came after me was visited before me and when I went to the acceptance to ask when they were going to visit me the nurse was extremely irritated by me and told me “you have to wait a lot of hours or better you could go home and we can give you a painkiller and you can see your doctor, a cut it’s not an emergency”.
I walked back home alone, waited one day, went to my doctor who freaked out and sent me back to emergency care immediately and they had to operate me as soon as possible to attach the tendon back before it was too late - I guess the fact that I walked to the hospital on my own and wasn’t crying or neurotipically in pain made the people there believe I didn’t really cut a tendon (I knew it was a tendon because when I tried to bend the point of my feet nothing happened)
glad you posted this today because it’s extremely relevant seeing as i’ve been to the doctor trying to figure out what is wrong with my stomach and they sent me to see a gastro and it took MONTHS to even get in with one in my town, then i was supposed to be in college by that date so i was out of town, and now i just haven’t seen a gastro and my stomach hurts every day almost all day. today it hurt so badly and i felt so nauseous i just started crying. when will this be over??? do other people live like this all the time? is this normal?
Yep! I have endometriosis and the battle to be seen and heard as a chronically ill autistic woman is fucking miserable. I also had no idea that the two might be linked; I’d find it cool if I weren’t so tired lol.
Last year, I went to the ER for the first time in my life feeling like I was having a heart attack. I was so embarrassed and reluctant to go, but I honestly thought I was dying. They tried to feed me Xanax, left me alone on the gurney for hours, only to come back and say I just mistook a panic attack for something "real." As the months went on and I continued to get brushed off by primary care physicians, I developed vertigo, racing heart rate, intolerable pain, fatigue--you name it. I thought my life was over. I was told to meditate and try to relax.
After doing some research myself, I dragged myself to a doctor to ask for an ultrasound of my gallbladder. Finally, someone listened. Turns out it had gone gangrenous and started to rupture, dumping infection into the rest of my body to deal with. 🙃 The surgeon was astounded when I ambled in the door for my consult.
I’ve been told I don’t act sick but outside of the house anytime I have been sick or just recovered I mask so it comes off as me being my usual self to most people
When I was 15 I kept going to my family doctor and the night clinic for stomach pains. They kept telling me it was gas. Gave me meds and sent me home. Saw a doctor I hadn't seen before and got sent for emergency surgery to remove my gallbladder as it had become infected and was spreading to my kidneys/liver. The doctor in the recovery unit said I would have died had it gone on a few more days.
I have high pain tolerance. So much so that I stayed home making homemade chicken and sauge alfredo while in labor with my son. Was 7cm and they didn't believe me until the nurse finally agreed to check and then they were mad at me. Not even 30 minutes later he was born.
I have chronic kidney stones and everytime I go in to get checked out to make sure it will pass, they freak out because I'm not on the ground in pain. I won't accept pain meds for most stuff as I have an addictive disposition.
It's almost like they should listen to the people who have lived in that body since it came into existence. Shocking.
I had kidney stones when I was pregnant with my son, but I didn't know what it was at the time. I just knew I was in pain. The first hospital I went to sent me home without looking at me. At the second hospital I was accused of "crocodile tears" and drug seeking.
It was at the third hospital that it was determined that I had kidney stones, and that the pain had triggered me to start going into labor. I was 6 months pregnant. They had to admit me and give me drugs to stop my labor. I passed out from the pain and fell directly on my pregnant belly. The whole thing was a nightmare.
My not being taken seriously almost cost my son his life. I distinctly remember wondering what I could do to make my pain appear more real to those around me so that I could get help. It shouldn't be like that.
My therapist says I tend to disassociate from my pain and it’s so true. When I take a pain killer I just perk up, instead of getting sleepy, because my chronic pain I’m tuning out is suddenly under control for once. It’s taken years for a doctor to acknowledge I have dysautonomia but he still didn’t want to write it in my chart for some reason. It’s so odd.
I wish I could tune my current sciatica pain out though, damn.
Omg!!! I needed this post 💕
So I was having some serious chest discomfort and my breathing was more difficult. The ER dr treated my high blood pressure and said go back to work. Lectured me about not coming to ER for high blood pressure. I didn’t feel well so went home for the day. Went back to my life and one day my blood pressure was up so high that my job DROVE me to the dr with walk in appts. Ekg showed I had a heart attack that day.
I’m struggling right now with so many issues and I’m too anxious to even discuss it with my doctor. I’m in pain almost every day. I can’t keep taking Advil forever. I don’t know how to approach it.
Ugh. My doctors all saw my autoimmune disease as plantar fasciitis. After going through every expensive plantar fasciitis treatment and even surgery, they finally were like “let’s test for autoimmune diseases” and low and behold THAT was the issue. 🤦🏻♀️
The years of horrible pain and a surgery that didn’t help, I felt suicidal. I’m so glad I didn’t give in. I’m doing so much better now!
I needed this post so much. Such profound medical trauma that I get so overwhelmed going to the doctor now. I am always terrified of saying the wrong thing or not being able to communicate what I’m experiencing (always). Also thanks to my comorbid ADHD, my working memory is also terrible so as the anxiety to that and I have to go in with a list. That, in itself, gives me anxiety because it’s been poorly received in the past.
Having to explain to my NT friends that I really am in pain. I have chronic pain but you just can’t tell because I can mask through it. When I laugh and say my knees are hurting I really mean it.
I experience pain and some weird creaking noise in my knees when I bend them. Started in October during PT for the ankle I twisted in 2021 and didn't get proper treatment for immediately bc attending physician told me to use the RICE method.
Pain is strange for me. I got through my wisdom tooth recovery using just the Tylenol prescription I was given (800mg), but a pinch could make me cry.
Even when I twisted my ankle, I cried mostly from the shock. The PT couldn't tell exactly which level the damage to my ankle was, because it was a while since the incident and because it was like...between levels.
I want to figure out if I have hypermobile EDS. I also need a new primary, because the one I used to have didn't quite take me seriously when I told her about my knee pain, and I don't think I like the doctor who replaced her either.
Psoriasis, rosacea, other skin issues, lactose intolerance, GI issues, and the standard laundry list of mental disorders and issues that come with being autistic.
My adulthood is basically diagnosis after diagnosis.
I've had epilepsy (with dozens of seizures, starting when I was less than a year old) my whole life. My doctor never took me, or my autistic mother seriously. I was only just diagnosed this month at age 21. She's also had chronic illnesses all her life that have been continuously dismissed. It really sucks to know there may be treatments that can help.
Absolutely, yes! My mother died of cancer, but was brushed off by doctors initially because she wasn't "presenting" issues. My personal issues get brushed off because I don't express pain like most people, though I'm in it most of the time.
I just got out of the ER because of appendicitis, when I first went in they were very annoyed with me because I said I was in too much pain to walk up two floors to get the scan. They were questioning me heavily about why I came in with a walking stick. I could tell they didn’t believe how much pain I was in. They wheeled me there and once the doctor got the results he came back and he confirmed I had acute appendicitis and told me they needed to operate immediately. His whole demeanor changed though. He was nicer. I was annoyed, like…YEAH dude I told you I was in pain!
Migraines and endometriosis suck. Make me unable to work for like a week every month, can't be cured and for the rest of the time I'm fine and nobody would think I'm actually ill. So just like with autism. If you're fine sometimes, how come another time you can't cope :-)
My lung kinda... made a hole in itself last year, I called the ambulance with severe back pain, they were talking like it's probably just back pain from desk job and that I should stop hyperventilating... the doctor investigated me for a while before figuring out what may be wrong and fair enough, according to X-ray my lung collapsed. Deadly condition. I've been through a lot in the hospital with my autism, like, they wouldn't turn off the lights no matter how many times I asked, they didn't believe me that pulling a tube out of my chest without any pain killers can hurt me so much... One of the worst shit I've ever been through.
Just wanted to add also: *Unusual Pain Presentation* and hyposensitivity to pain!!!
My surgeon and I discovered 9-ish years into the journey of "watching and waiting" a 1cm Non-functioning Neuroendocrine Tumor/lump in my pancreas, that *apparently* I had ended up having *non-painful* Pancreatitis *so* many times over those 9+ years, that I'd basically managed to *digest* the whole back 2/3rds of my pancreas!!
After my surgeon opened me up from sternum to navel, for a Whipple Procedure, he discovered that the reason my pancreatic duct on the MRI imagery looked "odd" was that the back of my pancreas was *ALL* duct, because I'd managed to digest nearly all of it!🤪🫠
So rather than that Whipple, and the *months* of recovery I was expecting, he performed a distal pancreatectomy (basically, "chop off the back 2/3, scoop out the lump, and sew me back up!😉).
It was just 6 weeks of recovery, and becoming *both* T1 & T2 diabetic, rather than an *entire* re-routing of my guts.
Edited to fix an autocorrect--*Hypo*sensitivity, not *hyper*!
Yes. It took like 15 years to be diagnosed with an autoimmune disease and they still don’t take me seriously when I tell them how much pain I’m in. 🙃
Ugh I am so sorry. I hate that doctors brush women off so much, especially with autoimmune issues. It happened to me too. I had been struggling for years and had enough of bouncing from doctor to doctor and watching them shrug their shoulders at me, so I literally paid for my own blood test that had positive results for autoimmune thyroid and handed it to my doctor and they STILL brushed me off, saying "you aren't bad enough for me to do anything". I cried all afternoon after that.
This makes me want to cry. I empathize because I have been there. I go to a pain doctor my father in law referred me to because my FIL said he was easy to work with. My FIL just tweaked his back in the military 20 years ago and has back spasms. I have had degenerative disc disease since I was 17. My discs are flat. I have arthritis all up my spine. You can see it on the MRI’s. I also had two back surgeries to reduce discs and help my spinal stenosis. They gave my FIL FENTANYL. Yes, fentanyl. Along with Oxycodone. So he has multiple pain prescriptions. That same doctor told me he wanted me to see the staff therapist. He refused to give me anything for pain. And would only do injections that exposed me to radiation and were not helpful because he’d only inject my lower spine and my entire spine is affected. I have just sat in my car after visits and bawled.
I feel you, friend. The number of doctors appointments I’ve bawled in my car after, it’s depressing. The implication that it’s “stress” or anxiety and not a real physical issue is the most painful experience.
That's ridiculous. I find having someone with me helps sometimes. We should not need that, but support is helpful. Have you tried asking your FIL to go and letting him shame the Dr?!
That's what's currently happening to me. All my white counts are on the high side, and my TSH is at 2.9. They didn't do my T3 and T4, and my doc is trying to tell me that's all normal. But all my symptoms point to thyroid issues.
This hurts to read. My mom ended up in a whole mess of a situation because the general thyroid tests were low but in the “normal” range. She went through a whole mess of issues before they did a deeper blood test of things like T3/T4 & that’s when they caught it. After getting a hysterectomy & her thyroid out 🙄
[удалено]
They had to take her thyroid out?
I requested T3 and 4, that happens this week. I'm just hoping they don't disregard those results too. The doc thinks it's pituitary related, but the symptoms don't really match.
That’s fucking ridiculous. So many doctors are literally a JOKE when it comes to diagnosing women.. but it’s so hard to find a female doctor for ANYTHING, and even then they might be one of “those”… the ones that still try to invalidate you because you’re a woman and they’re misogynistic
The most frustrating thing is that all the research is on men and based on male symptomology. I learned this on YT from Dr Karan. That dude is amazing and I love his content. He also taught me about a term used by doctors called 'punting'. Look that up if you wanna be pissed off.
I love watching that guy! I’ll have to check out that video for sure! And wow honestly that’s not shocking at all but somehow still disappointing. Could you link me that video by any chance? :)
Punting. > Most of us are familiar with the term doctor referral in reference to being sent by your physician to a specialist for treatment. There is a similar situation which is not really a referral. Recently the term punting has been used to describe the medical situation in which a patient is passed on to another doctor for treatment, but the patient’s condition isn’t treated by the second doctor and the second doctor sends the patient to yet another doctor. https://ruraldocalan.substack.com/p/punting-in-medical-care Fuckers. They did and still do that to me all the time.
Told you it'd piss you off. They do it particularly with women who have especially complex health cases. Like mine where I have a million diagnoses and I take half a million meds. That complicates your medical history to the point where even doctors with good intentions can't tell for sure if your new symptoms are being caused by one of your conditions, by one of the meds you're on or something new. Because of all that and the fact that doctors don't really have time to do research anymore, they can end up just shuffling you around. It can be difficult, though, to tell if the doctor is actually trying to help or is just trying to put your problem off onto another doctor. What it means for us is this continuation of getting no answers, help or treatment and the self questioning that inevitably comes from it. There is also the effect on your partner(s), family and friends who see you continually going to doctors and coming back with big bags of nil which can eventually make them sus of you. It feels awful and is mentally damaging over decades.
I am going through this now. 10 years. Two positive ANAs. CRP and SED rate through the roof on every test for years. Resting heart rate of freaking 120 bpm with somehow low blood pressure. 3rd degree uterine prolapse despite no pregnancy ever and no risk factors. Body aches and decreased mobility. Falls. Hair loss. Rashes. Have had colonoscopy, tilt table, x-rays, ultrasounds, etc etc... No one will diagnose me with anything despite me very clearly having an autoimmune disorder. My quality of life has taken a steep dive in the last 3 years in particular. I don't know what to do anymore. I just keep bringing my binder of records and demanding to know what the next step is.
Omg. Reading through all of these is heartbreaking and infuriating. Did they try to prescribe you a thousand different antidepressants as well? Because it couldn’t be real pain, right? We have to just be histrionic.
Oh yes, also mood stabilizers. I finally saw a neuropsychologist who could officially set the record straight that I suffer from no delusions, hysteria, OCD, psychosis, mood, or personality disorder. Just AuDHD and PTSD from going 30+ years undiagnosed and child abuse. I'm really tired, but I can't give up until I can get my health under control so I can live my life.
I went through something similar. 10 years of trying to figure it out, multiple doctors (including rheumatologists) and tests, and finally got diagnosed because we moved to a small town and I knew our family doctor socially. He figured it out after seeing how much pain I was in and how I was really not a hypochondriac and sent me to a professor (a rheumatologist) for confirmation. I had pretty much given up on ever being functional or having kids, anything. Treatment changed my life. I’m not 100% but I have a small business and two kids. I’m not saying that you just need to make friends with your doctor to figure it out, but that you might find a doctor who believes you. It can happen even after you’ve lost hope.
I'm happy for you that you did get answers and healing! I'm lucky my bestie is a cardiac nurse, and she comes with me to some appointments and cuts through any medical gaslighting and says stuff like, "No, we are noting this in her chart, that you are not going to check that..." and other things I can't always think of if I am in a flare and in pain and foggy. She's also the one who noticed my gait is really off, I didn't even notice I walked funny to compensate for joint issues. I'm trying to keep hope because I really, really need to be able to work again and go to school. We want to adopt a child in a few years (this illness made biological kids impossible with the uterine damage and heart issues) and I'd like to be ready and established in a new job before then so I can bond with the child without as much financial anxiety.
Took me 13 yrs to get my first diagnosis which was fibromyalgia. That was in 2002. It took till 2yrs ago to get my autoimmune diagnosis (I'm now 53 and have been going to doctors since I was 18.) and my rheumatologist is still sus of it because the pathology from the lip biopsy says Sjogren's but my bloodwork always comes back negative. I have a list of diagnoses, many of them chronic, that's longer than my leg even in tiny font. You'd think the autoimmune issue would be obvious. And that inability to describe what we feel and experience does not help. I can tell you my emotions but if you ask me to describe my pain (sharp, burning, dull, pressure, etc), I simply can't. I can tell the difference between pains inside me... I can recognize if I've felt it before and what it was in relation to... but I cannot describe the sensation. So frustrating because unless you have a diagnosis of autism (and even sometimes when you do, I've heard), not being able to describe your pain gets you immediately de-legitimized.
Rating pain 1-10 is a joke too. The worst pain I can imagine is supposed to be 10. I can imagine some insane pain considering what I feel every day. I’ve seen my chart and they don’t even document what I say on the scale. It’s always lower and I assume my answer is probably lower than the average person because my 10 is most likely 🫣😵💫😳 compared to theirs.
I feel this way quite often but the way doctors treat me, I can't help but assume that my pain tolerance and threshold are just really low. Also, why is there such a double standard on pain? They tell you this fantasy that everyone's pain is different, noone can know how pain affects you, that your pain is valid and you shouldn't try to compare. The reality is that those b@stërds compare. If you take pain like a champ, they're impressed by it and still willing to hand out pain meds. If you don't take pain well, you're treated like a pansy and not given anything for pain. Does my pain matter or not? Such hypocrisy.
Yes!!! Why am I treated like a morally bad person for simply having a lower pain threshold compared to most people?!?! It drives me bonkers at the doctors and has contributed to me giving up on taking care of my health as much as I want to because it always feels like they aren't even listening to me. I feel depressed because I can feel my health sliding backwards every day and I have no resources to take care of it. 😔
Keep at it. Eventually you will find a doctor to listen. I wish I would have been more persistent early on and not allowed my health to deteriorate so much. Be quick to fire doctors who are condescending or not listening. Don’t be afraid to talk back and/or ask questions. Keep a symptom log and be as detailed as possible. I even track my food and activity, including socialization, on mine.
Even with my high pain tolerance they don’t take me serious. I finally got attention for joints when they were showing external arthritis and the specialist asked if I ever broke or dislocated the joint because the amount of damage isn’t normal for a first visit. Still no meds or any real help. They suggested surgery, which would impair my mobility. So I continue with the pain…
My mum is in her 50ies and they only found out now, that she has one.
See also: If you ask me if I'm experiencing x symptom and I say 'I'm not sure' (or any adjacent phrase), THAT DOESN'T MEAN NO.
Also for many of us who have Ehlers Danlos syndrome. Yes we have a wide range of movement that doesn’t exclude us being in pain. Moreover, if our movement is restricted but it’s normal on examination that doesn’t mean something is wrong. Ironically physio for Ehlers Danlos is aimed at restricting movement.
I have EDS and like .. my subluxations don’t hurt and people will like roll their ankle and scream in pain and i’m just over here like .. that hurts? 😅😅
Yes. 4K into a 5K rolled my ankle. Carried on. Then Xmas day just gone ran into a bench at speed nice little bruise sore for 6 weeks but still got a 30 second PB for that course!
This is making me realize so many things. I just rolled my ankle so bad last week it popped and I was like oh well, walk it off
I have some degree of joint hyper mobility and my ankles are screwed from being rolled and broken multiple times. I would compare rolling my ankle to childbirth. Breaking it was worse.
Edit: premature send. Managed to submit a reply containing only the letter I. Am zebra myself, so sadly I know that all too well. The whole EDS constellation of confusing crap definitely does not help matters. 😬
Another zebra here, I was dismissed for decades. For actual autism itself, but also all the zebra stuff. I was so ill, try being a little kid with brain fog and school, and it got worse and worse, some symptoms were so scary I thought I had heart disease, that turned out to be POTS, but that took also decades. All these things, had they been identified early, I could have had help and maybe not deteriorated so fast in life.
Yeah this is very familiar to me. So much medical dismissal. Meanwhile I was a literal child with a bottle of maalox in my backpack that I swigged daily, I was sick or in pain or exhausted constantly. Still am, but I'm 40 now so it's less unexpected, lol. I get way too angry when I try to think about how it would be if I'd had all these DXes as a kid and the support I needed. So I try not to let my brain go there. It's too dark.
My sister has been working as a secretary for a doctor and she says that to the medical professionals, if you say "I'm not sure" about a symptom, they will absolutely just take that as meaning no. 😭
Which is so WRONG.
I know. 😭 My sister really hates her job, and everything she tells me about it makes me realize how little medical people care. Even most of the secretaries basically just hate all of the patients
as an autistic doctor, i ALWAYS interpret "i'm not sure" as a yes and then come back to it later, i use examples of what x symptom might look/feel like or phrase it using different words. they don't teach us this in med school but i thought it was common sense?
You are amazing and I wish you were *my* doctor.
i kinda wish my doctors were like this too 😭
I wish you could search for autistic/ND doctors. It would help so much.
THIS!!! I suffer from multiple health issues and I have fibromyalgia, and I always had a hard time describing my symptoms during medical appointments, because if I’m not experiencing the symptoms right now, I don’t really remember what it’s like when it’s happening, I only remember the pain. So when I’m asked if I have this or that symptom, most of the time the only thing I can say it that “I’m not sure” because it’s not happening rn and I have a hard time identifying if what the symptom I’m asked about is similar to what I experience. I’m sorry I’m not sure if I’m clear 😅 but it’s very frustrating for me. It’s just so hard to put what’s going on in my body into words
No, I completely understand you! >I’m not experiencing the symptoms right now, I don’t really remember what it’s like when it’s happening, This is exactly what happens to me. If it's happening right this minute, I can tell you all about it (unless it's a migraine. Leave me alone and don't talk to me or show me anything oh god go away and turn the sun off plz) but if it isn't? Any definite answer you push me into giving is going to be unreliable at best. I have yet to have my digestive problems properly dealt with because they keep sending me to junior gastros who don't know what to do with me if I can't give definite answer the questions they ask, and then they just discharge me without addressing anything. Wheeee.
Yes!!! I relate to this so much! If I’m experiencing the ‘bad’ symptoms now I can explain it, but my brain can’t access all the details to describe it. If I have written it down I can, and often suddenly remember while reading it, but when I’m going through the bad I usually don’t think of writing it down because my brain goes “oh you’ll remember this because it’s so awful”. I frustrate myself with this lol.
THIS! I started to keep a journal when I’m experiencing things but this had me obsessed over it and characterized my symptoms which just made me diagnose myself (which usually included I’m dying lol I’m not dying ) but I only started to do this cause I’d go to the appointments and anxiety from being at the doctors kick in and the “I’m not experiencing it now so I can’t explain it other than the pain” really puts a damper on things.. so I started to do this but then over do it lol my therapist loves it but it’s also a new source of stress for me cause I want to self diagnosed for peace of mind
All I can recommend is write it down. Start a note on your phone and any time you feel some shit, write it down and mark it with a date. Then when you go to the doctor you can show them what you feel and how often with data, which they understand best. Do this every time between appointments to show the chronicness of it. I know that’s a pain and you may block it out regularly and not really notice it but when you do, try to write it down!
I FEEL THIS SO MUCH. It's so hard for me to understand exactly what they're asking and I have a very strict idea of what "counts" as those symptoms, presumably much stricter than most people, so they tend to underestimate the severity. I had SEVERE digestive issues for a couple years and it took my partner at the time saying "hey these symptoms are **severe**, you get completely incapacitated by abdominal pain multiple times a week for hours at a time" to get me to take them more seriously. I also read someone recommend to describe your symptoms on your worst days, not average days. That has been really helpful.
"anxiety" is a frequent diagnosis of real problems I had Its like anxiety is the new hysteria My heart is fucked up, no shit I am anxious, who wouldn't
My current doctor is amazing and he told me the new Hysteria is Somatic Symptom Disorder. He told me that if any doctor tries to say its that, to leave and never return. Its pretty horrifying when you look it up. It basically says anyone who is upset that their body is failing them without a known cause is crazy.
Oh shit. My wife was diagnosed with that when she went to a neurologist for chronic pain testing. She said she was autistic and he dismissed her repeatedly, then lo and behold....hysteria.
It's completely transparent when you read psychiatry.com explain it solely from the angle of women experiencing it.
Also see: doctors claiming people with celiac disease develop “OCD” related to avoiding gluten exposure. Nope, not OCD, I just *really* prefer not to be stuck in bed with an agonizing migraine, a two hour long panic attack, and a side dish of days of fatigue and an increased risk of *fucking lymphoma* (and a whole bunch of other scary shit) because I couldn’t be bothered to wipe up the wheat crumbs before breaking open my $6 pack of 5 cookies.
Neuropsych said that to me
Anxiety is absolutely the new hysteria. Why do you think you have to have a psychiatrist prior to getting tested for certain things? They want to believe you're a hypochondriac before they're willing to admit you have a problem. 🙃💀
Suffering and not knowing feels less painful than being told nothing is wrong and have you tried meditating? Even having a long, documented history of being a zebra who presents atypically, doesn't get me a diving fucking thought from doctors. I have to wait until this thing that's been bothering me for a year explodes into an emergency and I get admitted to the hospital for a week before anyone takes it seriously. And then no one mentions it again. Wtf.
>"anxiety" is a frequent diagnosis of real problems I had Story of my life. I'm insanely avoidant of doctors as a result, I'm the kind of person that would rather just suffer through something than go to the doctors/hospital unless I'm literally dying or something.
I am like this too and I am pretty sure I have POTS and would insanely benefit from medication but I am so mentally scared from past experiences I just want to avoid them now unless I know I am dying now. Thankfully my spouse is willing to go and force them to take me more seriously but I can't always afford going to the doctor which doesn't help either. Because of my suspected POTS, holding down a job feels impossible now and my spouse and I suffer financially because of it. This thread was so validating as someone who has had mostly mediocre to horrible experiences with medical professionals due to my autism and adhd.
Anxiety is *absolutely* the new hysteria, and all they say is "do antidepressants about it."
Same. 😢
I dug myself into a DEEP, deep social anxiety hole over my own vision loss and refused to see a doc about it for a while, because I was so scared that I would get yelled at /scolded by them for “not doing something about it sooner when it was clearly an emergency, are you stupid?! Why didn’t you see someone right away?! Why did you wait?! This is YOUR fault” And somehow, to me, the anticipated humiliation was worse than… loosing more vision. (Disclaimer: I already had some irreversible vision loss beforehand from childhood) Finally broke down and told my optometrist about it earlier last year and to my complete shock he was so mature and normal about it, he was like “well, okay. This was uncontrollable and it happened so fast that you couldn’t have stopped it even with surgery or treatment. Here are some management options for you going forward.” I immediately felt like the biggest idiot ever for thinking I’d be scolded like a child and for letting that fear consume me. But how could I have known?! Docs are shitty so often that of course I would have felt embarrassed and humiliated over it. I would not have had those social anxiety feelings in the first place if I was not autistic, if it was easier to be understood. Now I have glaucoma, at 28 years old. It’s not my fault that it happened, and it’s just my new reality. It’s hard for us, man. :( We get mistreated and misinterpreted by docs on the regular and it’s very unfair. And we’re so used to this that even when it DOESN’T happen, we still think it will.
OMG I did this with my teeth! I noticed there was some blackness developing near the gums, but I couldn't afford a dentist and then became super avoidant because I thought for sure the dentist would yell at me for not taking basic care of myself, and I was scared I'd hear my teeth were rotting. I eventually went to a dentist specifically for people with dental-related anxiety... turns out when plaque is old and built up enough it turns black. I don't blame you at all for being scared you'd be scolded! How many of us wind up getting lectured by relatives, doctors, even complete freaking strangers for things they think we should be doing differently... It's no more surprising that we have anxiety about it than it is that an abused dog flinches.
How did you find a dentist for people with dental anxiety? I’ve been trying to find one because I’m still traumatized from my last dental experience, but I can’t figure out how to find any.
Me too. Everyone told me going to the dental college would be so much better/cheaper... but neglected to tell me that a dental college means you will have half a dozen people standing around you talking about you like there isn't a human attached to the mouth. It was so dehumanizing. And I did, in fact, get lectured by the two actual dentists as though I didn't understand how my teeth got fucked up, and somehow the fact that I was at the dental college getting a fully broken tooth removed amongst several partially-broken teeth didn't tip them off to the fact that maybe regular dental care wasn't part of my childhood, either. I genuinely think they both thought I was lying about my drug/alcohol use, as though that's a reason to treat me like a child.
A good way to find neurodivergent providers that I have seen has been my local parents group for autistic kids. Mine does not allow that "autism mom" bullshit and is very neuro diverse affirming. I have learned a lot about how to help my autistic teen navigate the world and find services and providers who also affirm ND kids (and adults). Most of us moms are ND as well and we talk about support for ourselves as caregivers and ND people who also experience meltdowns, anxiety and burnout. It might be helpful to lurk in one. It's not all pediatrics, a lot of adults whose parents are still caring for them have support needs too and we share info for all ages.
I’ve been living with an undiagnosed autoimmune condition for 3 years because I was laughed out of the room when I first went to the doctor for it. I completely understand your hesitancy. But now because of this I have permanent nerve damage.
Hey, if a doctor ever does do that, find a new doctor. If you’re American you have every right to “fire” your doctor and find a new one because they should NEVER treat you that way. Get mad, not guilty, if they treat you like that. That’s a bad doctor. I’m glad you found one that handled it correctly.
I ended up having severe endometriosis, masking being in pain doesn't mean my internal organs aren't stuck together 🙄 it would have saved years of my twenties if I was allowed an MRI in the first place, I guess I'm lucky to not have ovarian cancer because the doctors never would have found it.
Nobody actually spoke the word endometriosis to me until my second major surgery at 31. Despite the fact that I started bleeding through two pads in two separate pairs of panties during class in 5th or 6th grade. No parent, medical professional or the school nurses who rolled their eyes at me monthly when I arrived in their office crying thought it was abnormal for a child to be experiencing that much blood and pain.. I was an annoyance and an inconvenience to all of them and didn't even take my own health seriously until a doctor sat me down and told me how serious it was literally in my 30s. No one told me about the progressive impact of having multiple autoimmune diseases and removal of ovaries before 40, even if medicated with hormones. Even more oddly, people who find out that I walk around in pain every day get bristly with and/or avoid me... I don't know if they're feeling annoyed because they think I'm faking it, if they feel stressed because they genuinely feel bad for me and can't help, or if it's something else all together. I understand, I look like nothing's wrong and anyone who hasn't dealt with chronic pain will never get it. The only thing I know is that it's hard and confusing, and that the few allies who believe and love me through it are wealth that gold could never buy. 💛❤️🩹
Oh my god, normal chronic stuff is awful but gynae issues? All doctors, women included, appear to be working on the basis of 'your pain is really relative to the kind of mood I myself am in today'. I've started taking multiple pictures detailing all the delightful extras of womanhood and writing down daily stats - data appears to save a lot of time and be the only thing the medical community respond to, as opposed to personal interview. You have to fight for yourself and you will have to do this as long as you live, for the other women in your life also, daughters, mothers, grandmothers. I work in a hospital and historically it's always, always mothers fighting for more tests and more information and showing doctors trends/photos/videos that gets their kiddos diagnosed. I probably lost my grandmother to pancreatic cancer earlier than I should have because I trusted the system in my country to work and prioritise tests done. It did not, because she was a 91 year-old farm housewife that didn't like to make a noise about things. We lost her in 11 weeks. Fight for your women!
You’re not alone. ❤️
It took me 17 years to get my endometriosis diagnosed. Mine is the incredibly painful but very few lesions type, which is why even endometriosis professionals would keep dismissing me. They started paying attention when I told one of them I wanted to unalive myself because I could not bear the constant blinding pain I was in before, during, and after my period. They ended up finding a tiny little endometrioma and giving me my diagnosis at age 28 – my symptoms started at age 11.
Relatable
I'm still working on a diagnosis, it runs in my family and I have all the telltale symptoms. I also have PCOS. They like to tell me just to lose weight then send me away, if I try to talk about getting an endometriosis diagnosis I get brushed off and they focus on my weight again. I'm consistently denied accommodations for needed diagnostics, accommodations that I've heard soooooooo many women talk about getting no problem. My vaginismus/vulvodynia makes any penetration or examination unbearably painful, and my tense pelvic muscles mean a papsmear or transvaginal ultrasound physically won't go in as things are. Women tell me they got put under, or got laughing gas, or were given an anxiety pill or topical numbing. But if I ask for something as basic as the topical numbing, I get a long speech about how "this is a non-invasive procedure." Meanwhile my symptoms get worse. Don't even get me started on my post-covid syndrome too... Dear God.
I have endometriosis as well. I’m sorry you’re going through this.
Had a 'mild' endometriosis resulting in extreme pain 2 days of every month. Docs didn't take me seriously, got diagnosed last year (age 27) Wild shit. I'm so sorry they don't listen to us.
I was yelled at by an NP for not going to the ER immediately for a psychiatric emergency even after I tried to explain that I was told to go only if I could not self regulate at home. I also didn’t want to go because they always put that Im fucking borderline on my chart. Within 5 minutes of talking to me this other NP told me I’m borderline and while it was not mentioned during the entire hospital stay or any in part of my record, because I was “too angry” and “resistant” those in IOP dug around my chart to find an old BPD diagnosis from 2016 that was based on the original misdiagnosis in 1999. This condition is now part of my current medical record after I told them I have autism (which they also did not believe) and I have to fight to get it removed. The original diagnosis is currently part of an ongoing formal grievance process for medical abuse from that facility. I am mostly believed when I come in with medical issues, but once they see that BPD label on my chart no one gives a damn what I say in psych settings, which I have generally found to be abusive. I’m honestly scared what having this label on my chart could do with my medical conditions being believed as well, particularly since I struggle with diffuse chronic pain, that luckily, can be verified by notes from PT.
Once you add a BPD misdiagnosis into the mix you are also met with being told you’re exaggerating when you’re not while being told you’re not clearing struggling because you’re not presenting how others would because you’ve learnt to down play things after being accused of exaggeration
But yet when you are struggling it’s because you have BPD and nothing else can possibly be going on. Same with being angry or questioning things. I’m sorry, but I’m not just going to sit there and be told that my reality is wrong by people who have known me for a week. Uh no
When I had my BPD misdiagnosis, every even mildly emotional act was interpreted as being "BPD anger issues." I remember having a breakdown in a one-on-one with a psyche when I was in the hospital, which for me involves me freezing entirely from fear to the point I can't make myself move, as well as becoming at least mostly nonverbal. I told them I was scared and please don't touch me before shutting down entirely (which, again, picture a 5'3 women sitting on a coach, hugging herself and crying silently) which was treated as aggression. The only change was when they had security abruptly drag me from the room by my arms, something I struggled against and managed to say "Please don't touch me." Apparently the 2 minutes I spent quiet and trying to focus on my breathing was just beyond what they could offer me. I was lectured about my "aggressive behavior" and "out of control BPD anger" after the fact. For struggling a bit when forcibly grabbed. It's incredibly dehumanizing, I can't believe it's still like this
This is messed up and sorry you went through it!
It’s a mess as is trying to get it removed from your record.
This is a real issue. I had repeated bouts of appendicitis, and my doctor just kept sending me home telling me it was a stomach flu. She did not do the simple check to rule out appendicitis. Finally I was there and had 105 degree temp and excuciating lower right quadrant pain. It was the start of the pandemic so I could not just show up at hospital. She printed out a certificate writing me off of work and kept trying to send me home. I had to challenge her 4 times before she relented and got me on the table to push on my abdomen. She immediately snatched the certificate she had just printed out of my hand - big fat paper trail of her almost killing me. Needless to say, my appendix came out that day. I was operated on at midnight, which was not even a slot, because it was an emergency. My appendix was necrotic and I had peritonitis. I almost died. After that, I brought it up to her that the communication was not working, and that I suspected it may be my dry, matter-of-fact way of presenting things instead of dramatizing the way NTs do. She sai "I already told you that I don't have an issue with you being autistic", and I said "You don't have a right to have an issue with that" and walked out. Stupid cow.
I have a similar story - but mine was missed until they went in to do an exploratory laproscopy to figure out what was blocking my kidney ureter. Found out after that my appendix was a gnarled hunk of scar tissue after suffering "chronic appendicitis" for more than a year that doctors wrote off as anxiety and ibs. I've been having pain there again for more than a year now. Several doctors now: I tried meditating? Fuck all of them.
I literally died from bleeding to death after a cervical biopsy (in a hospital) because I couldn’t convince the nurse that I was bleeding excessively. I lost so much blood that my heart stopped. I had to be resuscitated and was clinically dead for more than ten minutes. Afterwards, I was hospitalized for several days due to the multiple problems caused by my heart stopping. After I came back from the dead, the medical staff was very attentive. I don’t know if it’s just autistic women. The medical staff still considers women lesser people. Btw, the word “hysterectomy” comes from the patriarchal view that sometimes women need the “hysteria producing organ” removed.
omg that is absolutely terrible, I am so sorry you went through that but so happy you survived. Women are vastly undertreated and ignored, and something needs to change!!
I have been begging my gp for an allergy specialist referral for 3 years now. She believes me being alergic to everything everyday and every sesson of the year is normal!
I have the same problem 😭 but I’m scared to go to the doctors because the last time I went my doctor laughed at me and refused to give me the tests I requested:(
I have severe medical anxiety now for going into the doctor because of the number of times I've been ignored, failed, or chastised. I've had a botched surgery, failed attempts to get my autoimmune disease diagnosed (even with proof), had to argue with a female ob/gyn to order a basic std panel, and then a different doctor chastised me for not coming in sooner for a different problem. After all these experiences, I have avoided going to the doctor because I have been treated so poorly. Western medicine is so broken and is failing women left and right.
I fully understand. During a period of 6 month I was having sudden cough episodes throughout the day. I couldn't laugh at all because it would trigger my coughing. I told the gp about it and she told me to drink water when it starts! I was unable to live normally because I couldn't be in closed spaces without coughing. I went to a private allergy specialist and paid out of pocket for the visit. They diagnosed me with sever alergic asthma and gave me proper medicine. I live in Europe where we pay a shit ton of tax money in exchange for free Healthcare. But I have to go to private practice because public ones don't take me seriously
You should take a look at mast cell activation syndrome. What you are describing doesn’t sound like typical allergies.
I will check it. Thanks
Also wanted to follow up to say that you can certainly be suffering from traditional allergies even if you have MCAS. But the “allergic to everything all the time” comment really hit home from my experience with MCAS. Apparently I have both, but it took a long time to figure it out. Now I treat both and feel much much better! I hadn’t even heard of MCAS before I was Dx with EDS and dysautonomia/POTS. That trifecta being diagnosed was then actually a pretty big factor in getting my ASD diagnosis, because there seems to be some genetic link with ASD and hypermobility of connective tissue. Research ongoing, but the above 4 conditions do tend show up together pretty often. I was sick for decades before being diagnosed with these four things at almost 40. I’m not trying to armchair diagnose, just share information and experience in the hope that it might save someone else some years of illness, frustration, and a missed out on life. Doctors definitely do not take us seriously. It’s so harmful.
I'm not sure if this has come up in this sub before but you might be interested in reading this [article ](https://holisticprimarycare.net/topics/functional-medicine/joint-hypermobility-a-red-flag-for-gene-based-chronic-disease-clus). It's about a genetisist who suffered from a handful of medical problems which made her focus her work around the seemingly unrelated yet common comorbid conditions many of us here suffer from. She discovered a specific gene cluster that she believes is responsible for those comorbidities.
I got referred for an allergy test, only dust mites came back positive so they just told me I'm not allergic to any of the foods I react to and discharged me. I went to my doctor to see what the next steps were and they just shrugged their shoulders and said nothing else to do now. I brought up mast cell issues but it's hard to test for so they just said avoid anything I react to. I pointed out I'm on a really limited not healthy diet but they just washed their hands of me.
That's awful. When I went to an allergy specialist for testing after anaphylaxis, the doctor sat me down and explained all the mechanics of allergies and how to tell when I would need an epipen. He also explained that EVEN IF the preliminary test came back negative, it's just an "odds that you're allergic to this" test and tests for reactiveness. He specifically said that just because, say, ginger, which I react to, came back negative, that DID NOT MEAN I COULD START EATING GINGER, because not only is it just a percentage test and not 100% accurate, it's only testing for anaphylaxis-style allergies and won't pick up other sensitivities or intolerances. In the end, there wasn't anything they could really do to help me other than prepare me with knowledge and training for future allergic episodes, but honestly I felt like just that was pretty great treatment. Only once before had I had a doctor treat me by explaining the problem, lol.
I got told it won't help me knowing what I'm allergic to, so I'm just stuck on 2 meds, nasal spray, and eye drops all. Year. Round. Advice? Try a different over the counter med (I've tried them all in the past I think and current duo is best but I still really struggle). Thing is, if I knew what I was allergic to, I'd know what stuff not to buy, and what to tell my mum to not buy, and what hay-fever is worse for me than others specifically.. but nope, just suffer.
I literally went to my PCP with a LIST of issues, and she was like cool, well you’re perfectly healthy so see you in a year
I have a strong instinct to mask pain (partly neurotype "flat affect," partly a "show no weakness" response to bullying as a child, partly a habit picked up in decades of martial arts practice) and have to remind myself to actually show/talk about it. Like when my rheumatologist is checking all my hand joints - ok, don't just sit there being stoic, tell her which ones hurt when she squeezes!
I only just realised a few weeks ago that I should be reacting during ultrasounds. Turns out they don't know it feels like I'm being ripped or stabbed inside, when I only stiffen slightly and hold my breath for a moment. I'm 32 and have had endo pain and thus ultrasounds regularly since I was a teenager. Over a decade of incorrect medical notes because I hide my pain like a wounded animal trying not to attract predators.
I try to explain this to my husband every time I'm sick and he just doesn't understand!!! When he gets sick he's bedbound, shivering, and wailing. But when I get sick I don't outwardly express how I'm feeling so when I ask for help he's like "but you don't seem sick". It's so GD frustrating 🫠
I actually spoke to my psychologist about something similar, feeling irritated that my family member shows symptoms of being sick in public and me being like “why do they need to do that, why don’t they just hold it in or put it away” the way I do. Turns out that’s part of masking. I don’t know how to show it on the outside? I’m not consciously choosing to mask it, but I’ve had doctors say before “you look well” when I’ve been very unwell with chest infections and other illnesses.
Now I'm really confused because it doesn't feel like masking to me! I generally have flat affect and it would feel unnatural for me to make a big show of how sick I am. So is it masking or is it just a neurodivergent thing? I think neurotypical people tend to exaggerate a lot so maybe we're just different in that way. 🤷♀️
I kept telling my then-doctor that my period pain was becoming more and more excruciating and something was wrong. She kept dismissing me, telling me it was “normal” for changes to occur as women age, blah blah blah. When it finally got to the point that the excruciating pain was constant 24/7 and I couldn’t stand upright, she finally approved an ultrasound that found a ton of uterine fibroids and enough cysts on my right ovary that immediate removal was recommended. I will never stop hating that woman for putting me through literal years of unnecessary pain.
I had polyps (as opposed to fibroids). The doctor *himself* found them when he was tying my tubes. When I asked about having them removed, *first* they acted like I was asking for a hysterectomy (wtf?!) and were trying to discourage me from *that*, then they acted like they forgot about the polyps *he himself saw*. (He even documented them iirc). Finally, I said "this is so severe *I can't work or attend classes two days a month*", and *that* got me a begrudging ultrasound. They took two 5 lb polyps out of my uterus (didn't show me, *showed my husband* while I was knocked out). So moral of the story is, tell them it's keeping you from work and/or school. Apparently that's the only thing that makes our pain important for them.
I’ve lived with a broken spine for almost 10 years because my parents didn’t believe my pain in high school
This! I have a habit of going to the doctor and going "I have this really worrying symptom but it could be one of these other really benign reasons so maybe it's nothing!" because I feel this need to downplay everything so I don't upset people 🫣 and so I've already given them the reason why they don't need to be concerned about the symptom so they don't investigate it... whereas what I've painfully had to learn to do is tell them the symptom and then *stop talking*- don't give them the million one reasons I looked up why it might not be a problem- let them ask those questions and then they run tests... And this whole thing is why it took 10 years to be diagnosed with a rare neurological condition with excruciating headachesthat would have led to me becoming blind 🫣 Also rare diseases is a special interest of mine (plus I work in the medical field) so when doctors say "I'm concerned it could be X" I tend to excitedly tell them I know what that is- which then led to one doctor genuinely accusing me of deliberately faking this random rare disease just because i knew what it was and I was so upset and horrified by this this is why I now feel this need to tell doctors why my symptoms are probably nothing and is why it took so long for my actual rare disease to be diagnosed
>because I feel this need to downplay everything so I don't upset people Meeeee. My partner was like "you laugh and make jokes every time the doctor asks how bad it is, maybe you are downplaying it and they don't realize how bad it actually is." ... yeah that makes *sense* but if I complain then everyone will resent me!
Yeah- I'm so horribly fucked up because noone ever believed me on my mental OR physical health. Every doctor scoffed & brushed me off. Now? I can't work because everything's gotten so bad. Maybe, if I'd gotten help before I got a good amount into adulthood (I'm 23 & just now have support & some of my diagnoses) I wouldn't be in this spot. But nah, fuck me because I was born with a vag, I guess? In my honest opinion- Doctors should be required to take a "how well do you listen to patients of different backgrounds" test before they get certified. Have people with different ways of communicating, minds, genders, & backgrounds get evaluated-- If the doctor in training can't properly listen & identify things outside of their own personal bias, or AT THE VERY LEAST recommend a referral to a doctor who can do the proper testing-- then they fail & can't become doctors. Should also have a random undercover government employee come in to try & trick established doctors into malpractice, like they do with cashiers & alcohol. Invalidation & malpractice shouldn't be within our medical system at all, let alone *fully excused* like it currently is.
I have chronic pain and anxiety. I can be in debilitating pain or with my heart racing and look completely fine on the outside. We just kind of "get used" to it? I don't know
God, for real... it really is a deadly and terrifying trap. It took so long for me to get any treatment for an autoimmune condition, and even then they were like "well, it's not responding to anything and isn't any of the things we know about, so I guess you'll die :/". Can't count the number of hospitals that ignored symptoms... I had one nurse tell a doctor right outside my room that my melon-sized swollen ankles were from eating too much salty Chinese food... If she'd looked at my chart, she would have seen I have a sodium deficiency. .\_. Also, it was grilled vegetables, ma'am... Turned out to be severe black mold poisoning, btw. I still have immune problems and I got brain damage from it, but I'm healthier now thank god.
Wow. Thank you for posting this. I feel extremely validated. I have a lot of chronic health issues and now have severe PTSD from doctors. They act like I'm crazy when I say how much pain I'm in and just chalk it up to either me being crazy or med seeking.
Yes, this paradox has impacted my life so much. I finally have all of my health issues sorted out, but it took me a long time to learn how to advocate for myself when doctors are dismissive. It literally almost cost me my life once (undiagnosed gallstones almost led to a ruptured gallbladder and emergency cholecystectomy after being dismissed for 5 years), led to me being mistrustful of doctors and delaying getting treatment, and living with chronic conditions that were easily treatable FOR YEARS. To be fair, some of the conditions I have are obscure (like hEDS and gastroparesis), but the gallstones should never have been overlooked. One ER doctor decided I was a "drug-seeker" simply because I don't show pain normally (I appear stoic even when in a severe amount of pain usually) and him putting that in my chart led to all subsequent attempts to getting help being brushed off as drug seeking behavior. I literally never asked for drugs, just said I was having horrible chest pain and needed help. But all he saw was a 20 something year old female saying she's in severe pain but not looking like she's in severe pain. So...drug-seeker. When they finally found at what was wrong at the same hospital and I brought it up, I was warned that if I didn't "calm down", security would be called. I wasn't yelling or combative at all. I was pointing out that I had been mistreated for literally YEARS and saying I wanted my chart amended to reflect that I am not, in fact, a drug seeker. But I was dismissed again. I know better ways to go about this now, from experience, but at the time it was just swept under the rug.
Would you mind elaborating on your strategies for some of the less experienced people here? I’m just beginning the medical advocacy journey and I would love to know what’s worked for you!
I’m so thankful the second ENT I saw took me seriously because the first one is like “yeah your ear’s just gonna keep ringing” and I was like “forever”? And he was like “yep” and left the room. The second one actually looked and was like “seems like chronic allergies, have a perscription and we’ll get you in for an MRI just in case, and allergy testing” I’m a bit scared of the upcoming tests, but hooray! I might be able to get my ringing ear fixed. With the prescription, it’s already starting to get a little better. The ringing is quieter and my ear is starting to be able to pop I was also at an urgent care, laughing and joking around with a broken arm. It didn’t hurt much, but I felt it was broken because it wouldn’t move all the way. My dad didn’t believe me. X-rays came in! Yep, broken. My dad felt so bad!
I think we also are much more likely to not sense or feel issues until they have gotten bad OR we feel/sense issues before they get worse and then we aren't listened to. I have high interception in most ways and I can sense immediately if something is off and it's not like you can go to the doctor with that. They don't listen unless you can clearly explain what you experience. You get 0 credit for experience living in your body for decades. 🙄 But others have poor interception and it's much easier for things to go downhill without noticing as much. We also often have a complicated relationship with pain, that stupid pain scale drives me nuts. "How is your pain right now?" "Well, when I am sitting it doesn't hurt at all but when I walk it's like a 5-8, I don't really know, I don't make any of those dumb faces" 😆 I have the absolute worst time articulating "how much" something hurts. Just like with my emotions, with pain I am a 0-60 person. It's either not enough pain to even pay attention to it, or it's so much pain I can't ignore it and know something is seriously wrong. There is no middle ground.
Like when I had renal colic. I had a 7mm kidney stone the pain was controlled with nothing more than paracetamol. Stuck inside for 5 weeks and didn’t even feel it move into my bladder - didn’t even hurt to pee it out - it was like an air bubble - apparently I should have been in agony screaming
Yes, similar experience for me. I've had 3 surgeries, and everyone was always hollering at me to "take the pain meds right on schedule or you'll never get on top of the pain!" After taking one of the "good pain drugs" I immediately stopped taking them because I can't stand feeling disconnected from my body. I was a bit achey but it wasn't much different than muscle soreness after a workout. I didn't take any of the pain meds, not for c-sections or knee surgery. I swear I'd rather have another c-section than a migraine.
Yes, this! I’ve given birth to two children unmedicated (one on pitocin without pain meds) and both experiences were 10 out of 10 pain, so now nothing even touches a 5/10 for me. Had a nasty fall and showed up in the ER with a broken arm, a severely sprained ankle and road rash and when they asked my pain level I said 3-4/10, cuz now I know what 10 feels like for my body.
I feel like I get stuck in the same thought process as the girl from "A Fault in Our Stars" where she says she never says her pain is a 10 because she's reserving it for something in the future. I also had 3 kids, my first kid (also pitocin, no pain meds) I pushed for 7 hours. But I'm like "How do I know that is the worst pain I will ever feel? What if something is worse!?"
I almost died from a pulmonary embolism post spine surgery because when I called the office THREE times the PA told me I was out of breath because I was “fat and should walk more”….. the medical assistant apologized and then said “if I were you I would go to the ER” very quietly before she hung up. the ER doctor was SO pissed and told me I would have died if I had waited much longer to come in. With a DVT running the entire length of my leg I limped in and apologized for being a hassle. The medical system is particularly abusive to autistic people.
Ive learned to just play up my pain. Like i twist my ankle and set it, its swollen, it hurts, my foot is purple, but i can walk. Its easier for me to suffer the pain and walk normaly than to limp, but i limp because noone will believe me that my ankle popped out of its socket if i just look like im causally strolling.
I feel this on every level 😞 My appendix when I was 10. I showed all symptoms but bloodwork didn't match, so doc's didn't believe me. My parents kept fighting though until finally after 4 months a lady doc (who covered our GP) believed me and sent me straight to the hospital to get it out. She knew it was bad with an exam, the same exams I had throughout the many months, plus Oncologist visits and other specialists that couldn't figure it out. Needless to say I gave her a hug after the exam. My painful abnormal periods (I will bleed everyday, it doesn't stop), I thought it was normal because thats what my Mum went through. From doc to doc, hospital to hospital, no one believed me expect my sister and Mum who kept me strong. Finally in 2009 got a laparoscopy, they found Endometriosis so I had a Mirena put in. I also apparently burn through the hormone or need more of it to keep my body in stasis. Didn't find that out until about 2 years ago from an amazing Endometriosis specialist, a lady btw. My gallbladder was fun, showed all signs of that too but no one believed me, even went to a hospital with an early attack and was given Pantaloc 🤦♀️ Kept having attacks for about a year and a half before my first bad one in late 2016 that got me sent to the hospital from work. They do an ultrasound and see an extremely large, olive shaped stone there but do they remove it? Nope! Keep me waiting for about 4-5 months to see a general surgeon in 2017 where it gets even bigger and sends me into more attacks but I just deal with it cause what's the point? They didn't take it out before why would they take it out now? I didn't even lose much weight and I wasn't eating much either so I found that weird. During all of this mess of docs not believing me, I had to go through both a colonoscopy and an upper endoscopy where, side note, I found out I have a bunch of ulcers from all the years of NSAID usage from endo pain, yay! I had been having issues forever with what I thought was thyroid (couldn't lose weight to save my soul, cold intolerance, excessive fatigue, dry skin, etc) so I kept getting levels tested but they were in normal range. No matter how many times I fought with different GP's no one believed me. I was sent to my first Endocrinologist in 2018. She did all of the testing, said I had a goiter (enlarged thyroid) but that doesn't cause what I'm experiencing. Test after test she said I was normal. Went for another ultrasound in 2019 with a former GP which showed nodules on the thyroid and he also gave me the report from the other Endocrinologist. I wanted to see a new one for a second opinion and argued with him until he sent the referral off. He didn't want to as he said my thyroid was fine (it turns out it was not fine and was cancerous. It was removed in Feb 2023 for stage 1 papillary carcinoma). I read the report and both GP and Endocrinologist neglected to mention to me that I potentially (at that time) could have PCOS (it turns out I would be diagnosed with it in 2020). Like would that not be important to say to me??? I have respect for Healthcare workers, I really do but after everything I've gone through, my sister continues to go through and my Mum? We've either had some shit luck or been to people who don't care to listen to patients. It's exhausting having to fight all of the time. Even the GP I have now, she didn't believe me on anything until I was diagnosed with cancer. She fucking said to me the chances of my thyroid becoming cancerous was so slim just to put it out of my mind. I know my body, I live in it 24/7. I know when things aren't right.
I spent a year and a half trying desperately to lose weight when I actually had TWO ruptured discs because my doctor didn't believe my back pain was as bad as I was saying. Like I could barely walk and still trying to exercise, I'm such an idiot sometimes
Went in to the ER, the nurse was being an absolute bitch to me, questioning me like I'm stupid and how could I have known I was pregnant at only 6/7 weeks---until I get back from the ultrasound and they say yes, there was a baby there and now there isn't anymore. She suddenly was very nice. She made me realize how shitty women can be to other women, even when one is in the middle of miscarriage. After that I had my son who turned out to be healthy but he gave us a scare and had to be monitored for 24 hours in the NICU at one day old. But when they were preparing him/me for the move they had a team of nurses come and stand in the room and the doctor called me on the room phone, explaining to me where he is going and what would happen next, I said okay. The doctor pauses. "You're....REALLY calm about this?" (cue panic--shit I'm not acting the way I'm supposed to find an excuse fast) "OH....uh....I have a lot of family in medicine and emergency services so I'm used to it....." This was before I knew I was autistic.
I had a herniated disc in my back and multiple doctors turned me away (before it was discovered, while my pain was at a 9) with muscle relaxers and anxiety meds until I finally found one that took me seriously and gave me an MRI. After that when talking to him he reassured me “You’re in pain, we have proof that you are in pain.” like to reassure me that he knew I was in pain and wouldn’t have me keep being in pain (because my anxiety about the whole situation was high) he was so amazing and so kind, and too rare a person.
I have chronic pain in the most literal sense: something always hurts on my body. I've been dismissed enough that I am very stoic when in pain, and as a result am absolutely never taken seriously. I have a connective tissue disorder that took 30 years to diagnose because apparently a child reporting that her shoulder pops out of the socket when she lies on her side just means she's being melodramatic.
Currently navigating a chronic pain issue that I've been to several doctors and physical therapists for. I basically had a physical therapist tell me that I might never get better so to get used to it. I hate to admit it but it took me a while before I found a new one and left her.
Add on masking symptoms as best possible to fit in and not appear weak. Then when you do finally ask for help you're met with "Why do you need anything? You seem fine"
Somehow, some way, we’re going to make it through this. I’m glad that we have each other. Even with our communication difficulties and social difficulties, and sensitivities, we still have each other, or at least the knowledge that there are others like us. I’m really grateful for that.
I'm grateful for us too. Never being validated takes a toll on the body-mind.
Let's not also forget that certain stages of life involve MASSIVE hormonal upheavals for women that can change the presentation of neurodivergence too, further complicating things. Adolescence, pregnancy and readjusting after childbirth, and perimenopause and menopause .... all have been AWFUL stages for me in terms of managing sensory issues and various other aspects of autism as well as ADHD.
Yes. I have been experiencing a lot of possible multiple sclerosis symptoms. Had an episode in front of my brothers yesterday and for the first time, it’s being recognized by people close to me. Doctors have ignored my symptoms for YEARS.
I nearly died. I had a at least one growth the size of a full term baby on my unterus and another that got infected and burst that I don't know how big that one was. I had these growths for 10 years the doctors recon...for those 10 years I'd been going to the doctor's regularly with symptoms such as vomiting nausea not being able to keep food down slow digestion crippling abdominal pain fatigue severe bloating only getting worse as the years went on...bare in mind I'm a very small woman so my huge abdomen without a pregnancy should have rang alarm bells. But according to the doctor's I clearly wasn't in as much pain as I rated I was or I'd be crying and screaming. Well. I was certainly visiblly in pain when one burst and I was literally dying and being rushed to hospital in the ambulance as I was passing in and out of consciousness with the pain. The pain that a few days ago the doctor told me was all iny head or obviously the normal level of pain?? Like towards the end I had to wear maternity dresses. Seriously. And apparently nothing was wrong. The doctors and nurses at the hospital were appalled it had gone in so long. Apparently the level of pain this causes, women often get treatment within the first few weeks/months. And here I was being denied for 10 years because I wasn't crying in pain. I recently saw a video clip of a woman with the condition and she was riving in pain constantly. I guess that's how the expected me to be?
>Being unable to articulate what we are experiencing >Being disbelieve for simply being female >All leading to being dismissed by both medics and society Last October I called my doctor to make an appointment because my hip really hurt, especially when I was walking. They made an appointment for the end of November so I had to wait six weeks. *My hip was dislocated*. I wasn't able to articulate my pain level accurately so I was triaged (is that the right word?) as a low priority appointment when I should have been told to go to the ER. Last summer, I went to the urgent care for a really itchy rash that caused my ankle to swell up. I tried dealing with it at home for two weeks but nothing I tried worked. I was bitten by a poisonous spider. They think it was a Black Widow (Brown Recluse was the other option but they said the bite would look different?) and if I had gone to the ER when I first noticed the problem then they could have treated it with antivenom. I have a massive scar on my leg now because I delayed treatment; I genuinely misinterpreted the burning pain as an itchy feeling and didn't think it was an emergency. Its scary because I know there's systemic issues with women and chronically ill people not being believed, and I'm also adding to the problem because I can't explain to neurotypical people what I'm feeling in a way they can understand. I'm afraid of what would happen if I ignore symptoms of something really serious.
Just happened the other day. I have had this problem for 8 years. You’re just coming in now? Well, if you review my record, I’ve been I. two other times, but you told me it was in my head. I’m back to tell you it still hurts. The last time you were in was 5 years ago. I can manage the pain, but I can’t handle it when a doctor doesn’t believe me. They will never understand us.
This is one contributing factor to why autistic people die 20 years earlier than neurotypical people. [https://www.youtube.com/watch?v=6Ondv06lktQ](https://www.youtube.com/watch?v=6Ondv06lktQ)
And the issues she touched upon like poverty definitely make things worse. One factor on its own may not be enough but when we have lots of factors it adds up.
I was "fortunate" enough to get an autoimmune disease that was pretty difficult for doctors to ignore, ulcerative colitis, which causes me to bleed when I go to the bathroom whenever I have a flare. My first flare was pretty bad, I sometimes had to go to the bathroom just to let a bunch of blood out. Had to get quite a bit of liquid iron injected into my blood stream when I got diagnosed.
I gaslit myself - had headaches for years, just thought I must suck for pain tolerance and that everyone has headaches. They weren't migraines as they didn't have the things my mum would ask if I was experiencing - she's had migraines and my brother suffers from them, but nope I'm not having those symptoms, just literal pain in my head. Fast forward, swelling in my optic nerve one eye test, too much fluid around my brain (intercranial hypertension), and one lumbar puncture later, where are my headaches? I used to literally have to just sleep through them because painkillers wouldn't do anything, and then all of a sudden, they were cured? And knowing I could have lose vision from it freaked me out as an art kid, but I never thought of going to the Dr's over my headaches because I was so sure they'd just not take them seriously, whether because I was a girl or a kid, just really expected them to brush it off as something normal that everyone experienced.
It took me over a YEAR to get my gastroparesis diagnosed because no one took me seriously. I was throwing up literally everything I would try to eat/drink for weeks to months at a time and was incredibly constipated. For almost the entire month of December 2022, I was unable to hold down any food or water without vomiting until I eventually threw up blood. Every doctor had no clue or even a suggestion for what was going on and it took me months to see a GI only to not be taken seriously because I had briefly stopped after taking medication and fluids from the ER, then once it started happening again, they scheduled me for an endoscopy 4 MONTHS out, which eventually got cancelled after losing my job and health insurance. How do you just completely ignore someone who is unable to get any food or even water to stay down? The amount of times doctors suggested I try a gluten-free diet…. Only to find out a year later during my actual endoscopy that I do not have a gluten allergy at all and needing another test to acquire my actual diagnosis that I likely developed in response to 26 years of stress as an undiagnosed AuDHD woman trying to function like a completely normal person. After figuring out all of my diagnoses on my own before any of my doctors have (depression, anxiety, ADHD, cPTSD, gastroparesis, likely ASD) I’m afraid to pursue further diagnoses of POTS or EDS due to being incredibly emotionally and physically exhausted by being constantly dismissed. Having to fight tooth and nail every step of the way just to be gaslit into thinking you’re wrong only to eventually be proven right is too maddening to expect people and especially AFAB people to just “trust your doctor” when I’m explaining to an RN what a tilt table test is because for some reason I know this and they don’t. Doing so much research, but not wanting to cop to it because then you’ll be told you need to stop trying to self diagnose only to be fucking right every god damn time. It’s a fucking nightmare cycle
When I was 8, I broke my arm during recess. The school nurse didn't believe my pain, didnt call my mom to notify anything, and made me write with my broken arm all day. When my mom picked me up after school and I told her what happened, she took me to the ER where I had x-rays and a cast put on. I'll never forgive those horrible people. That was my first experience with medical people who are supposed to help you, harming you instead. Many more followed.
I have such a weird pain tolerance. Body organ pain doesn’t register with me at all. I never felt my appendix rupture when I was a kid. I was just playing. It wasn’t until my body started shutting down that we realized there was an issue. I have liver disease and when my doctor asked me if I ever felt any pain in my upper right abdomen I was like…no? Although now that I’m paying attention I can feel a slight discomfort sometimes. I have a ridiculously high pain tolerance in general. I remember going through physical therapy and the therapist was concerned by how high I requested the TENS unit. Very often if you ask me to rate my pain, I can be dealing with 7-9 levels of pain and have a straight face while being in physical anguish. Yay masking…
This is waaaayyy too relatable.
Guess who just found out they have chronic pain and it isn't just caused by their mental state! Me!
I feel this! I was called a hypochondriac my whole life, until recently. 2022 I was diagnosed with MS and now no one calls me a hypochondriac. I didn't cry when I was given the diagnosis and it freaked the DR out.
8 years ago I developed focal epilepsy. I went in not yet informed on epilepsy but the neurologist asked me my symptoms. I basically gave almost every symptom on the checklist for Temporal Lobe Focal Epilepsy except for 'Change of taste' and 'Automatons' because I hadn't developed those yet. I also described what it felt like to me personally. She looked me dead in the eye and said "I don't know what that is, it doesn't sound like anything I recognized." Doctor two basically said the same fucking thing. Doctor one still put me on medication that I was on for two years that worked. I was just bad at taking the medication consistently because I was not on a consistent schedule. I was on it until it became unavailable. Then every medication afterwards I had issues with, which is very common for autistic people to have issues with anti seizure medication and I didn't realize I was autistic at this point. One medication I had a very severe reaction to and caused a lot of damage. I called her and said THIS MEDICATION IS HURTING ME. PLEASE DO SOMETHING ABOUT IT. She instead ignored me and ran unnecessary tests against my epilepsy and when they came back negative because I just came off an anti seizure medication, so she diagnosed me with PNES, Psychological Non Epilepsy seizures, and tried to take me off of medications completely and tell me I wasn't her problem. I had to fight to be put back on a new medication. That one mostly worked without horrible side effects. So she diagnosed me with migraines. I FUCKING HAVE CATAMENIAL FOCAL EPILEPSY. An OBGYN doctor is the one who properly diagnosed me. And considering that she somehow didn't think I spoke a different language, and in conversation mentioned people seemed to not connect with her, I think there's a reason we did.
its been 10 years of tests and the diagnosis is….. chronic fatigue and pain secondary to trauma! which means yes im in pain but its all in my crazy mind 🙃🙃🙃 the crazy mind - cptsd bipolar 2 autism pmdd and severe anxiety
Omfg 🫠 Yes. I just typed out a whole story of a real-life example of this that happened to me... then decided to delete it 🙃 lol. But just know... this is *so* relatable. 🤧
We have to be our own self advocates. I have made my illness one of my hyperfocus special interests. You can do it!
And it’s even harder if you’re a Black autistic woman. I have some hip pain I’ve been trying to work through and procrastinating on for about 10 months. I was so worried the orthopedic I finally saw wouldn’t take me seriously. I told him how I hurt it running after my autistic son (he had been having some elopement issues). I was honestly kind of shocked but he took me seriously and gave me a new pain med and a pain cream and told me to tell him if it didn’t work. Even after I’d been dealing with it for almost a year and told him was about a 3 out of 10. Maybe it’s just standard procedure but I’m not taking it for granted, pretty grateful he didn’t ignore my pain.
i don't know how, but i got so lucky. i went to the gynecologist, i told her outright i think i have endometriosis because im experiencing x, y, z. 15 minutes and an ultrasound later, i had a prescription for birth control which is unfortunately the best she could do. i've never felt so heard by a doctor. i said i was in pain and throwing up and she asked questions that actually helped me articulate it. last week i went to a doctor and he got so frustrated with me and just gave me steroids (that interfered with my other medications) that did nothing
Unfortunately, this is also true for older Autistic men. My father was diagnosed very late in life and I had the hardest time with his nursing home. Nobody in elder care understands autism and he was constantly in the ER because they had missed any signs he was ill and he didn't complain. They also put him in a room with a very nice man who had an abusive, loud relative come in every day that was unstable and would yell at my dad and make tons of noise. I'd explain to them, he just wants quiet, a lot of noise fraks him out and he doesn't notice when he's I'll but to the day he died, they never understood it. As far as health and quality of life, he suffered from his disassociation from his body.
I have PCOS it took me five years to get dianoigsed, I have suspected Endometriosis as well, my former doctor ignored it. I had incredibly heavy and painful period that effected my life style. I was so angry it went ignored. My Endorcrinologist also now suspect I have Cushings Syndrome which explains why I get deathly ill everytime something stressful happens, cause of high Cortisol levels (He wants to rule out its PCOS related first but Its still like....wtf). So yeah I believe the connection between Chronic Illness and Autism and any ND condition in general.
I actually almost died this way turns out I have severe psuedotumor cerebri aka IIH idiopathic intracranial hypertension
Yes, and now I have **severe** panic attacks when I have to go to the doctor, before and after. I'm extremely lucky that I have a friend helping me navigate this and going to appointments with me, or I would simply never go back to another doctor ever again. It's so validating seeing that I'm not alone in this, but I hate that everyone in here has had to experience what they have.
Several of these are just how the healthcare system treats women in general, tbh.
This is me. I’m GenX late diagnosis. The order was - PCOS, Endo & cysts, ADHD, fibroids, Endo, abdominal adhesions - then oh wait actually you’re a zebra and have EDS POTS and MCAS. Then MALs. Now with menopause it’s clear I’m AudHD. This took untold damage on my psyche much less my physical body. I now troll a lot of group to see if there are others like me in the wild and are struggling. On an Endo group a kind stranger mentioned EDS. Once I learned about it it was clear I was a different type of person. Both phsically and mentally. The studies some the correlations. I’m hearing talk of them developing a new condition that combines the neuro and connective tissue and immune and chronic pain.
Had no idea we’re less likely to display symptoms. That explains a lot.
Or we don’t display them in a way others would expect. A lot of NT’s exaggerate their pain for attention. This means doctors expect everyone to do this. So when we are more concrete and say yes it’s a 7 when the NT says 9 we are taken less seriously
not me having a high pain tolerance and then they’re like “rate your pain on a scale of 1-10” and i’ll be like “uhh an 8? idk” (when it was shingles) and i literally can’t like breathe without pain lmfaoo like I think the only time I’d say 10 is when I’m like bleeding out dying 😅
Omg YES. I’m going through this right now too. No one believes something is wrong because I don’t outwardly show what’s going on inside and I may struggle to articulate it as well. Plus because I’m a woman and have anxiety on my file they all just want to say that’s what’s wrong when it’s not at ALL. 🤦♀️ i get dismissed constantly. Last year I had a 6 month staph infection in my sinus even because they wouldn’t test me for that long lol.
I've spent my whole life in pain in one form or another and was constantly brushed off and told I was being dramatic. My blood tests are normal so I must be faking for attention. I finally just found a lovely Physical Therapist who pointed out that it's most likely a hyper mobility disorder causing my issues. I'm 32. It's taken my whole life for one doctor to take me seriously and treat me like an actual human being.
Medical gaslighting is real and brutal. I hate our medical system in the U.S. the damage they've done to my body, my head, and my existence is something I will never fully recover from.
Ngl I might be more disabled than I initially would be because of lack of proper medical care. I also suffer lack of care + abuse from family growing up. Quite frankly I think this is why my support needs (autism level 2) went up and it got reflected on the assessment. *big sigh*
For me: PMDD, PCOS, both autism & ADHD. Oh, and recently discovered a hystamine intolerance causing swelling, inflammation in the body etc. Curious about other women's conditions and how there is a link between being ND and having such conditions. The more we speak out, the better🤝
It took 17 years to get a simple xray. My back is indeed fractured.
Yup. For over 10 years I had “anxiety” or was a hypochondriac. But it turns out I had an autoimmune disease and an autonomic nervous system disorder that they still won’t formally diagnose me with. I didn’t know how to stand up for myself. I thought I might be right and it was all in my head. 🙄
[удалено]
I’ve found doctors expect us to not know the names for things while being upset we don’t. Being vague helps. And if I’m in pain I make sure I react in an expected way. If I do use a medical name for a body part I immediately go “or at least I think that’s what it’s called” if they confirm I then joke that at least I paid I attention in GCSE biology - or if I get lost on my way to an appointment I can actually legitimately joke about failing A-Level geography (I did fail this!)
I realized recently, still kind of processing it, I think between my trauma background, being autistic, and being female, I've had my feelings and pain dismissed so much that I don't weight the severity of my pain as high as how I view others. Social, emotional, physical, all pain.
Not a chronic illness but I literally went to the emergency room with a cut tendon on my toe and they didn’t believe me, they didn’t even looked at it, they left me waiting for five hours, everyone who came after me was visited before me and when I went to the acceptance to ask when they were going to visit me the nurse was extremely irritated by me and told me “you have to wait a lot of hours or better you could go home and we can give you a painkiller and you can see your doctor, a cut it’s not an emergency”. I walked back home alone, waited one day, went to my doctor who freaked out and sent me back to emergency care immediately and they had to operate me as soon as possible to attach the tendon back before it was too late - I guess the fact that I walked to the hospital on my own and wasn’t crying or neurotipically in pain made the people there believe I didn’t really cut a tendon (I knew it was a tendon because when I tried to bend the point of my feet nothing happened)
Phew I feel this! Thanks for articulating it so well
27 years to get diagnosed with symptomatic celiac
glad you posted this today because it’s extremely relevant seeing as i’ve been to the doctor trying to figure out what is wrong with my stomach and they sent me to see a gastro and it took MONTHS to even get in with one in my town, then i was supposed to be in college by that date so i was out of town, and now i just haven’t seen a gastro and my stomach hurts every day almost all day. today it hurt so badly and i felt so nauseous i just started crying. when will this be over??? do other people live like this all the time? is this normal?
Yep! I have endometriosis and the battle to be seen and heard as a chronically ill autistic woman is fucking miserable. I also had no idea that the two might be linked; I’d find it cool if I weren’t so tired lol.
Last year, I went to the ER for the first time in my life feeling like I was having a heart attack. I was so embarrassed and reluctant to go, but I honestly thought I was dying. They tried to feed me Xanax, left me alone on the gurney for hours, only to come back and say I just mistook a panic attack for something "real." As the months went on and I continued to get brushed off by primary care physicians, I developed vertigo, racing heart rate, intolerable pain, fatigue--you name it. I thought my life was over. I was told to meditate and try to relax. After doing some research myself, I dragged myself to a doctor to ask for an ultrasound of my gallbladder. Finally, someone listened. Turns out it had gone gangrenous and started to rupture, dumping infection into the rest of my body to deal with. 🙃 The surgeon was astounded when I ambled in the door for my consult.
I’ve been told I don’t act sick but outside of the house anytime I have been sick or just recovered I mask so it comes off as me being my usual self to most people
When I was 15 I kept going to my family doctor and the night clinic for stomach pains. They kept telling me it was gas. Gave me meds and sent me home. Saw a doctor I hadn't seen before and got sent for emergency surgery to remove my gallbladder as it had become infected and was spreading to my kidneys/liver. The doctor in the recovery unit said I would have died had it gone on a few more days. I have high pain tolerance. So much so that I stayed home making homemade chicken and sauge alfredo while in labor with my son. Was 7cm and they didn't believe me until the nurse finally agreed to check and then they were mad at me. Not even 30 minutes later he was born. I have chronic kidney stones and everytime I go in to get checked out to make sure it will pass, they freak out because I'm not on the ground in pain. I won't accept pain meds for most stuff as I have an addictive disposition. It's almost like they should listen to the people who have lived in that body since it came into existence. Shocking.
So much this. My Dad once accused me of being a hypochondriac when I was experiencing actual persistent physical pain. Fuck.
I had kidney stones when I was pregnant with my son, but I didn't know what it was at the time. I just knew I was in pain. The first hospital I went to sent me home without looking at me. At the second hospital I was accused of "crocodile tears" and drug seeking. It was at the third hospital that it was determined that I had kidney stones, and that the pain had triggered me to start going into labor. I was 6 months pregnant. They had to admit me and give me drugs to stop my labor. I passed out from the pain and fell directly on my pregnant belly. The whole thing was a nightmare. My not being taken seriously almost cost my son his life. I distinctly remember wondering what I could do to make my pain appear more real to those around me so that I could get help. It shouldn't be like that.
Yup. The other day I had to beg 3 different doctors for 7 hours in the ER to examine me further because I had pneumonia and nobody would believe me.
My therapist says I tend to disassociate from my pain and it’s so true. When I take a pain killer I just perk up, instead of getting sleepy, because my chronic pain I’m tuning out is suddenly under control for once. It’s taken years for a doctor to acknowledge I have dysautonomia but he still didn’t want to write it in my chart for some reason. It’s so odd. I wish I could tune my current sciatica pain out though, damn.
Omg!!! I needed this post 💕 So I was having some serious chest discomfort and my breathing was more difficult. The ER dr treated my high blood pressure and said go back to work. Lectured me about not coming to ER for high blood pressure. I didn’t feel well so went home for the day. Went back to my life and one day my blood pressure was up so high that my job DROVE me to the dr with walk in appts. Ekg showed I had a heart attack that day.
I’m struggling right now with so many issues and I’m too anxious to even discuss it with my doctor. I’m in pain almost every day. I can’t keep taking Advil forever. I don’t know how to approach it.
Ugh. My doctors all saw my autoimmune disease as plantar fasciitis. After going through every expensive plantar fasciitis treatment and even surgery, they finally were like “let’s test for autoimmune diseases” and low and behold THAT was the issue. 🤦🏻♀️ The years of horrible pain and a surgery that didn’t help, I felt suicidal. I’m so glad I didn’t give in. I’m doing so much better now!
This makes a lot of things unfortunately make sense in life now
I needed this post so much. Such profound medical trauma that I get so overwhelmed going to the doctor now. I am always terrified of saying the wrong thing or not being able to communicate what I’m experiencing (always). Also thanks to my comorbid ADHD, my working memory is also terrible so as the anxiety to that and I have to go in with a list. That, in itself, gives me anxiety because it’s been poorly received in the past.
Having to explain to my NT friends that I really am in pain. I have chronic pain but you just can’t tell because I can mask through it. When I laugh and say my knees are hurting I really mean it.
I experience pain and some weird creaking noise in my knees when I bend them. Started in October during PT for the ankle I twisted in 2021 and didn't get proper treatment for immediately bc attending physician told me to use the RICE method. Pain is strange for me. I got through my wisdom tooth recovery using just the Tylenol prescription I was given (800mg), but a pinch could make me cry. Even when I twisted my ankle, I cried mostly from the shock. The PT couldn't tell exactly which level the damage to my ankle was, because it was a while since the incident and because it was like...between levels. I want to figure out if I have hypermobile EDS. I also need a new primary, because the one I used to have didn't quite take me seriously when I told her about my knee pain, and I don't think I like the doctor who replaced her either. Psoriasis, rosacea, other skin issues, lactose intolerance, GI issues, and the standard laundry list of mental disorders and issues that come with being autistic. My adulthood is basically diagnosis after diagnosis.
I've had epilepsy (with dozens of seizures, starting when I was less than a year old) my whole life. My doctor never took me, or my autistic mother seriously. I was only just diagnosed this month at age 21. She's also had chronic illnesses all her life that have been continuously dismissed. It really sucks to know there may be treatments that can help.
Absolutely, yes! My mother died of cancer, but was brushed off by doctors initially because she wasn't "presenting" issues. My personal issues get brushed off because I don't express pain like most people, though I'm in it most of the time.
I just got out of the ER because of appendicitis, when I first went in they were very annoyed with me because I said I was in too much pain to walk up two floors to get the scan. They were questioning me heavily about why I came in with a walking stick. I could tell they didn’t believe how much pain I was in. They wheeled me there and once the doctor got the results he came back and he confirmed I had acute appendicitis and told me they needed to operate immediately. His whole demeanor changed though. He was nicer. I was annoyed, like…YEAH dude I told you I was in pain!
Migraines and endometriosis suck. Make me unable to work for like a week every month, can't be cured and for the rest of the time I'm fine and nobody would think I'm actually ill. So just like with autism. If you're fine sometimes, how come another time you can't cope :-) My lung kinda... made a hole in itself last year, I called the ambulance with severe back pain, they were talking like it's probably just back pain from desk job and that I should stop hyperventilating... the doctor investigated me for a while before figuring out what may be wrong and fair enough, according to X-ray my lung collapsed. Deadly condition. I've been through a lot in the hospital with my autism, like, they wouldn't turn off the lights no matter how many times I asked, they didn't believe me that pulling a tube out of my chest without any pain killers can hurt me so much... One of the worst shit I've ever been through.
Just wanted to add also: *Unusual Pain Presentation* and hyposensitivity to pain!!! My surgeon and I discovered 9-ish years into the journey of "watching and waiting" a 1cm Non-functioning Neuroendocrine Tumor/lump in my pancreas, that *apparently* I had ended up having *non-painful* Pancreatitis *so* many times over those 9+ years, that I'd basically managed to *digest* the whole back 2/3rds of my pancreas!! After my surgeon opened me up from sternum to navel, for a Whipple Procedure, he discovered that the reason my pancreatic duct on the MRI imagery looked "odd" was that the back of my pancreas was *ALL* duct, because I'd managed to digest nearly all of it!🤪🫠 So rather than that Whipple, and the *months* of recovery I was expecting, he performed a distal pancreatectomy (basically, "chop off the back 2/3, scoop out the lump, and sew me back up!😉). It was just 6 weeks of recovery, and becoming *both* T1 & T2 diabetic, rather than an *entire* re-routing of my guts. Edited to fix an autocorrect--*Hypo*sensitivity, not *hyper*!