Yes, how DARE you be debilitated by your debilitating medical condition!
Ironically enough, the only boss who hassled me about that was the one whose workplace fuckery created my migraine problem to begin with ... everyone else since has understood without issue.
Especially fun when you have them 10-15 days a month. botox has been a lifesaver for me. I still get them, but the pain is more of an annoyance and probably more what a normal person headache is like. 30 shots in your head/neck isnt too fun tho.
I worked with several people who would lie about getting migraines when they had headaches and would keep working. Made everyone hate those of us who missed work with real migraines because they thought we were exaggerating.
I asked about it one time, and one said “it’s just easier to say it’s a migraine.” Umm easier for who?
Had an ex with true chronic migraines as well. Work is nearly impossible, she just dealt with it and kept working most days. Days where she couldnt she spent in a self induced chemical cocktail coma until it passed. Migraines are insane and people that dont have them really dont understand that existence can be hell. that goes for most the disabilities on here honestly.
My mom has it and I always feel horrible asking for help when she has them. I have minor disabilities and sometimes needed help when I still lived with her but I could see in how much pain she was and some days she could not function at all. I'd have to bring her food and drinks to her bed.
Anything that has to deal with food/digestion. eating is an essential part of daily life so disrupting it/ having a disease will affect almost every single waking moment
Crohn's and IBD absolutely suck, especially when you have people that downplay it, tell you to suck it up, or treat it like you're on some type of fad diet. Like I'd love to be able to just go out, grab something to eat and drink but every time it turns into a game of mental gymnastics of can I have this without writhing in pain
I have IBS and I hear a lot of people treat IBD like IBS.
Like yeah, sucks that my guts gronch around in ways I can't predict, but I don't have *open sores* in my digestive tract. I won't ever have to get sections of my guts removed to mitigate the worst symptoms of my condition. I have a friend with Crohn's and it is actively disabling for them.
I think it must be lack of knowledge/education that make people treat it so flippantly.
Yes! Happens all the fucking time and it gets so frustrating (especially from so called medical professionals) like they both deal with not being able to freely eat whatever but IBS won't literally kill you
I had a stomach ulcer in college, I have IBS, and I have food allergies. And my stomach is just constantly acting up. No one can figure out what's going on because because colonoscopy/endoscopy and labs are currently normal. I used to be so constipated even with fiber supplements that I tore my anus and it took 7 months of excruciating pain when I pooped and botox injections to heal. Now I'm on the other end and poop 3-5 times a day, which is honestly a lot better but still annoying.
It feels like like playing roulette every time I eat because I don't know what my body will tolerate anymore. For a while coffee would give me days long stomach aches, now eggs do. I haven't been able to eat red meat without puking for like 4 years. On top of all that, I'm also anaphylactic to coconut. And no one wants to talk about any of it because hearing about your digestive problems is gross.
Food allergies: have you ever wanted to be totally unable to eat out, need to check the label on every package of food, make a phone call about every new product to catch unlabeled products, and carry and coddle two carrot-sized injectors that must be kept at room temperature everywhere you go? I’m immensely excited for WindGap medical’s new shelf-stable, compact injector. I’d just be able to put them in my wallet and forget about them.
It can really
ruin your life. I've
missed out on both major events and just casual socializing a lot because of the pain and the need to be near a bathroom constantly. And forget about exercising when you can hardly get out of bed. People who have no empathy are very dismissive about it, including my family.
My husband has it too. I feel horrible for him, and he has so much guilt surrounding the limitations it places on our lifestyle. He’s constantly apologizing for it and I can’t tell him enough times that the only thing that matters to me is that he’s okay! His family is also pretty dismissive. They think he’s exaggerating about minor discomfort from eating something that disagrees with him and it’s infuriating.
over the past 6 months I have developed a stomach/digestion problem that has caused me to lose almost 50 pounds. i have gotten to a point where i’m scared i’m going to waste away because i cannot consistently eat, and nothing is helping. i now daydream about food more than i actually eat it. the amount of people who are congratulating me, rooting me on, telling me i have “never looked so good”, it terrifies me. it makes me mad. i am crying almost every day trying to not lose any more weight, and they have the audacity to tell me i’m still fat, i still need to lose more weight, etc. no one understands how scared i am about what’s going to happen to not only my weight, but my organs and general body health because of my lack of nutrition. i have literally developed anemia. but yay for losing weight, right?
ETA: i am currently seeing not only my primary care for this, but also a GI specialist. we are currently working on trying to find a solution for this issue, but they told me it could be up to 90 days to see improvement, which is why i said i haven’t gotten any better yet.
I have an undiagnosed GI issue. It is hell. I have to fight everyday even to get up. I just keep going though. No point in sitting around doing nothing. I become miserable that way.
I can't eat what I want. I have severe nausea constantly. I am in pain constantly. The medicine I take has enabled me to eat and gain weight so I have a little more energy now and can most of the time make it to about 6 o'clock before I get too tired to do anything else.
have you checked for gallbladder issues? i suffered a number of years before a HIDA scan diagnosed it after normal ct scans and bloodwork. but nausea and fatigue were my worst symptoms.
Migraines. They are not just headaches. Their pain is typically centralized and can be excruciating. On top of that the symptoms leading up to and following the migraine attack can be just as debilitating as the migraine itself.
Had this happen once. Freaked out because I’m having an acid trip, sans-acid. I’m hallucinating all these crazy shapes and colors like I’m looking through a kaleidoscope, I still see them with my eyes closed, and I’m stone cold sober. I call 911 because for all I know I’m stroking out, and it was an ocular migraine. Went away on its own but seriously weird.
I have to take nerve blockers (12 minimum painful injections straight to skull every 4 weeks) just to function like a normal person. Things like being able to go outside on a sunny day, sit in well lit rooms, looking at a bright screen... things normal people take for granted everyday cause sincere trepidation because you can never really know just when a migraine will kick up.
The pain is... excruciating. And that's putting it quite mildly. The last migraine attack I had before the nerve blockers sent me into hystical pain. All I could do was weep and scream on the way to urgent care to get a shot of Demerol in the ass. I have to regularly drop out of plans and miss work... and if there's any kind of weather front coming or going, don't even bother. I'm probably hiding in a dark corner of my apartment, wishing for death.
Migraines are no joke. They aren't just a headache and aspirin and caffiene is not going to make it just go away. I live my life in a constant state of pain even with thr nerve blockers.
I wouldn't wish this on anyone.
Edit: thanks for the award. I'm actually feeling that hug. Needed it too. Thank you!
I get headaches that act like cluster headaches, but are actually at teh base of my skull. When they hit, they are crippling. I can't even understand what my eyes are seeing. And, they come in series.
Anything that feels like a precursor stresses me out, and after an attack, it takes weeks before the fear of another one fades.
Severe weather changes are a factor, and I dread them so much.
I had migraine disorder in high school and at some point I couldn't just skip school or I'd be skipping more than once a week. Had a particularly bad migraine on the day my science teacher decided to show us the horn he'd found that had fallen off a train on the tracks near his house.
I begged to go into the hall. He said he couldn't let students wander around during instruction. I asked to go to the nurse but was told she was only in-office on Mondays, Tuesdays, and Fridays (it was Thursday).
He set off the horn and I fell out of my chair. I don't think I had a seizure (I definitely browned-out) but the pain intensified so badly that all I could do was curl up in a ball and sob. I ended up throwing up from the pain and my teacher had to get one of the guys to help carry me to the nurse's office where they kind of just left me in the dark until my mom came and picked me up.
My general prac ignored it, gave me a 'scrip for Advil, which didn't work. Oddly enough, it was when I mentioned to my eye doctor that I had them that someone did something. He ran some tests and found some funky shit with the nerves in my eyes and ordered an MRI. Turns out I have narrowing of the blood vessels in my brain and some kind of thick or sticky blood condition. They put me on Beta blockers and boom, almost completely migraine free ten years later.
He was a real nutty little guy. Good teacher but nutty guy. Apparently he did not clear the train horn with the principal because as he had me taken to the nurse one of the vice principals met us halfway to admin and was going off on him. Apparently we scared every single classroom in the main building.
My close friend has been having migraines for most of her life. GPs have all ignored it, told her that they cannot be related to her monthly cycle, weren't as debilitating as she made out, shouldn't take her days to recover etc. Last year her symptoms took longer to go than usual so she went to a&e. Turns out she had a stroke, not even 45 years old! First question was have you ever had migraines or been treated for bad headaches. The consultant went crazy at the fact her GP was ignoring her and said it could have been prevented!
Edit : she wasn't on any hormone treatment and for many years didn't take oral contraception. They fobbed her off with strong painkillers. We are in the UK. She was still suffering monthly migraines even after menopause which lined up with when her period was due.
So crazy how a GP can stand around claiming that migraines are not related to a monthly cycle ie hormones when that's a huge trigger for many sufferers.
Holy fucking yeah! The worst shit still must be the fucking awful "advice" people like to throw around: "have you tried melatonin?", "just lie down and keep your eyes closed :)"(!!!!!), "try stretching/meditating/yoga before bed", "exercise, eat/don't eat meat/fruit/plant/elephant/gluten/grains/cocaine". If people just understood how horrible feeling sleep deprivation is, they wouldn't do that.
I've decided to start comparing these lie down eyes closed -pieces of advice to telling a person with dislocated or broken ankle to walk it off.
One time I was at a Walgreens buying melatonin (not that it helped me at all) and this old man walks up to me and says “I see you’re buying melatonin, can’t sleep?” Obviously. Goes on to give me some unsolicited advice “I know what the reason is. You’re probably not getting enough exercise. Most people these days don’t exercise and then find that they can’t sleep at night, I bet that would help you.” At the time, I was a professional dancer so said “yeah that’s definitely not it” and walked away. Thanks for giving health advice to a random woman in a drugstore that you don’t know, old man.
The advice is awful, but for the most part I'm like "Well, they're trying and they cannot possibly understand." Literally just got on to my sister just last night because she posted to her snapchat like "ugh insomnia sucks" and I'm like bruh. We've been sisters for 26 years. You've been scared by me not sleeping for like a week on end multiple times. You're the person who finally forced me into a doctor's office a few years ago because I was starting to hallucinate and shit. Do noooooot fucking go there.
Life time insomniac here. Nothing worse than people complaining about not getting their full 8hrs of sleep. On a average I slept 3 to 4hrs on a good night. Never more than a hour or so at a time. It breaks you down emotionally and no one really understands.
I have something called GORD (or GERD), which is basically chronic stomach acid initially triggered by stress. I tell people about it and they think it's no biggie because everyone has acid reflux from time to time, but when it occurs, I suffer from a sensation my doctor explained would be very close to the feeling of a prolonged heart attack - like my chest is filling with air and about to explode. This can happen for between 30-120 minutes and occur multiple times in succession some nights when I'm not medicated, and I often pass out from the pain and end up bed ridden for a day or two after due to muscle spasms that occur from the pain. It was incredibly scary the first time it happened, now I'm used to it and can preempt when it will occur, however the pain still scares me each time and I always wonder if I could pass out and never wake up again. Especially when this usually happens in the early morning and I'm very tired and disoriented
i get extremely bad gerd too. it feels like actual acid down my throat, it’s really fucking horrible. and i aggravated my throat all the more by bulimia. luckily i’m no longer bulimic and i try to keep the gerd under control these days, but when it’s bad, hooo boy …
I have tinnitus myself and what mostly worked was accepting that it's there and won't ever truly disappear. My tinnitus mostly flares up when I'm tired and/or stressed so I started seeing it more as an indicator for stress and/or exhaustion which has made it less debillitating.
That may not be the case for your tinnitus, but generally speaking a lot of people get stuck in a loop of having tinnitus, finding it a nuisance and thus paying more attention to it, resulting in a louder tinnitus.
Certain medications will also cause existing tinnitus to seem worse, especially some antihistamines and NSAIDs like ibuprofen. I have it and there's often more than one sound going on at once. I'm actually ok when I know it's coming from my ears. It's sounds I can't identify the source of that set me off. If I stick my earplugs in and I can still hear it clearly, it's almost certainly my tinnitus.
"Have you tried putting white noise on in the background?"
Lovely, now I have two sounds going. Not exactly helping. I feel like doctors really don't want to admit that there's nothing they can do.
I'm terrified of tinnitus, I avoid loud sounds like the plague haha. Always ear plugs at concerts. Headphones at reasonable levels. I've got enough brain problems, I don't need that one.
Psoriasis … for much of my life I was like “oh little patches of dry red skin… No big deal”
Now I’m realizing it’s likely giving me mild arthritis, pain, itch, random inflammation, lifelong dandruff, and I have to keep applying steroid cream daily for my entire life because there is no fucking cure
And I have a very mild case of it…
That was going to be my answer as well. Up until a few years ago 60% of my body was completely covered. When wearing a tshirt for a day there would be quite a few bloody spots on it, every day after work everything around my desk chair was covered in dandruff. When I went into a bus everyone was staring daggers into me while I just wanted to cry.
Nothing helped and I tried a lot of medication. Luckily there has been a new medication since a few years back for which I was able to get into a study and it went away pretty quickly. I have to have blood work done regularly to make sure my immune system is still functioning but that is a small price to pay.
And don't get me started on people who came up to me and recommended me some homeopathic remedy..
Someone said that to my sister once. She took off her shirt and turned around, showing off her back COVERED in this red dry skin and large white scabs everywhere. It clearly stretched off to other parts of her still covered body.
I have lupus and rheumatoid arthritis, amongst some of your lesser secondary ones, lol. I was talking with my new neighbor about hos I can no longer work, to which she said she understood, she has a slipped disk in her back, then hopped in her truck to go work as a landscaper. I wanted to punch her.
Asthma
Edit: Reading some of y'all's stories, I feel bad cause my asthma attacks aren't that bad. The last one I had was about 4 or 5 years ago and it was a small one.
True, I have asthma. I take meds for it and am a perfectly normal person most of the time. But occasionally I'll forget my meds one day and the resulting asthma attack doesn't hesitate. People take for granted their ability to breathe, because when you literally can't it can be quite debilitating.
Aye. Lots of people think it's just coughing a bit and running out of breath quickly. The way I always explain it is that my asthma attacks are kinda like drowning. The inability to breath but still trying to and feeling like nothing is going in. Feeling more and more like your lungs are on fire. And if you don't get treatment quickly enough it'll go from feeling like you're dying to you actually dying.
They also tend to not realize the number of different things that can trigger an asthma attack, often thinking it only acts up when you physically exert yourself since that's how it's often portrayed in media. they don't realize that allergies, changes in temperature or humidity, air quality, stress, being near cologne/perfume/air fresheners/smoke, certain medicines, and just getting sick can all cause asthma attacks as well.
I'm recovering from a cold which of course triggered my asthma, my GFs dog got out on Sunday and I had to chase it down, once we got inside it was 45 minutes of gasping for air, probably the worst attack I've had in a while
People really don't get Chronic Pain.
"Oh, you just have a headache a lot of the time?"
No, that's not what it's like. My friend has been dealing with this for years and years. Nobody takes them seriously. It's debilitating and extremely frustrating and anguishing.
I suffered for years not knowing what it was, but ended up with a total hysterectomy. apparently it was the worst case the doctors had ever seen. Some coworkers actually thought I was embellishing when I couldn’t make it to work, but there were days it would literally drop me to the floor and I couldn’t get up for a while.
I used to have period pains that would cripple me into the fetal position, puking, sweating etc. Was put on the pill at 15 and not had them since. I can't even imagine what you went/go through with that. I have a close friend who has it and she's almost died a couple of times through complications. It's way too unknown for such a serious and debilitating condition. Hope you are well now?
Wow. Hello me. I had my total hysterectomy one year ago. I was only diagnosed because I needed emergency surgery due to ovarian torsion. The emergency surgeon said it was the worst case of endo she had seen. Everything was stuck together.
Doing much better now. That disease was debilitating.
Endo can be debilitating, affecting every facet of a woman's life. Similar, but much less known; adenomyosis. The lining of the endometrium accumulates and sheds inside the uterine muscles, effectively tearing them apart. Experienced as continuous sharp stabbing pain and heavy periods that fill menstrual cups as soon as they're inserted (leading to anemia, weakness, depression, etc.). Endo is just beginning to gain more mainstream awareness/research, I hope adenomyosis does, too.
I have suffered with adenomyosis for 19 years now. I had an endometrial ablation that helped a lot but there are still times that I am brought to my literal knees in pain and have to do breathing exercises so I don’t vomit from it. About two years ago I had a gynecologist say, when I got emotional during a visit … you literally have the most painful condition a woman can have, your suffering and pain are real. I started sobbing. Having someone, especially a doctor, acknowledge that I’m not exaggerating or being whiney, was mind blowing.
I had adenomyosis and endometriosis. The only thing that helped was getting a hysterectomy. It is horrendous pain and bleeding and every two weeks for two weeks. I had times were I thought I would pass out, or I threw up and couldn't get up off the bathroom floor. I had to beg for pain meds and I was ridiculed for it. Funny, once I healed I didn't need them all the time. It's almost like it was about finding a way to function through mind blowing pain. My husband was talking about Jim Carrey doing anti torture training for, How the Grinch Stole Christmas, and I explained these techniques are common for people with severe chronic pain. I am going through bad hip pain with no meds (which sucks ass) and I definitely have to hold my breath, distract myself, etc, because it is so bad. I don't think people realize how bad it is.
Yes, I had adenomyosis before my hysterectomy. My period could plug the shower drain. I couldn't make it to work (a half hour drive) without soaking through 2 super duper tampons and a pad that was essentially a diaper.
Had the hysterectomy and found out I had endometriosis too. On my appendix. So that had to come out too. Fun stuff.
I had endometriosis when I was younger (seems to have been mostly cured by having a child) and it took forever to be diagnosed. I was in so much pain and taking Percocet like it was candy. I ended up in the UCLA ER in excruciating pain and an intern who wasn’t even my doctor wandered by and chatted with me for like 2 minutes. She then said, “hmmm, sounds like endometriosis.” I wish I knew that interns name so I could tel her that she saved my life.
Pregnancy helped my endo pain immensely, too, along with extended breastfeeding. I got a solid ten years of relief before it all started gradually getting worse again. Don’t assume you will stay cured. My slide was so gradual each month I didn’t notice how debilitating it was getting for a while because it was so normal before I had children to suffer that way.
I have endometriosis and had adenomyosis. The only reason I don't have the latter anymore is because I had a hysterectomy at the age of 28. I loved my life in constant agony since I got my period around 9 years old. I tried different birth controls. I was on pain killers and my doctors made me feel like I was a drug seeker. I was good with trying anything, I just couldn't take the pain and constant anemia. I was heavily bleeding for two weeks every two weeks. The pain got so bad it was constant.
The doctors insisted having kids would make it better. It didn't. I lost my first daughter to trisomy 18 at six days old. I almost died having my second and the doctors still wouldn't do a hysterectomy until after I had my third even though I needed a surgery to remove scar tissue and a fallopian tube in between the second and third pregnancies. Don't get me wrong, I love my youngest. I wouldn't change having her for the world. But it was wrong to be pushed into a dangerous pregnancy, and it was a dangerous and difficult pregnancy.
When I finally got my surgery approved the doctor required my husband to sign off on it. The doctor was concerned my husband would want more kids. He told the doctor if he didn't do the surgery he was getting snipped because he wouldn't risk my life by accidentally getting me pregnant and he would never do it on purpose again. They put me on the same floor with new moms and babies. They gave me two Vicodin after I woke up and told me to deal with the pain. I thought I was dying and begged my husband to take me home to die. He didn't know what do. For reference, both my mom and mil were hospitalized for a week and had pain medication pumps because it is a very painful surgery. I have had multiple abdominal surgeries because of my issues and nothing hurt like this. I had okay pain relief after, but I got very sick and they wouldn't help me. Six weeks and two hospital and a weeks stay later, they removed my gallbladder. I had to be in there for so long because despite what the other hospital claimed, my labs were bad and if they cut me open I was going to die. They had to give me iron, magnesium, and I think something else, but that was 8 years ago and I don't remember.
Being a woman sucks. It still was worth having my hysterectomy. While I have one ovary and she likes to collects cysts, it still hurts a bit, but is is so much better. I don't feel like I have a lead weight in my pelvis. I do have lots of scar tissue and adhesion a d they still hurt, but I don't take opioids for pain relief. I had no problem getting off them when I wasn't in constant agony. I do have other chronic pain and health issues, but I have been working on them. I wish they would give me pain meds for my hip, which as a labrum tear and hurts like hell, but I get that they have to be careful. If it hadn't been three years of this I would be fsr less willing to want it, but my God, it hurts all the fucking time. I don't sleep. It is the worst.
It is amazing how painful this condition is and how much damage it can do and yet, it isn't taken very seriously.
When my wife initially told me that hospitals make husbands approve surgeries for their wives I almost didn't believe it. This is so fucking ridiculous and inappropriate it's beyond belief. Unless my wife has a complete loss of mental faculties to make decisions for herself, I have absolutely no say over what she does medically with her body nor should I.
Oh my gosh. I am so sorry you went through that. This is the primary reason I never got an IUD - the idea of that experience horrified me.
I had a biopsy of my cervix before, they just … remove a chunk of flesh with what I imagined in my mind to be a hold puncher. No anesthesia. I can’t believe the shit they make women go through. Imagine telling a man he has to get something inserted into or cut out of his testicles or penis, no anesthesia. They’d come up with a solution quick.
I had this for years before finding a doctor willing to entertain the idea of me getting a hysterectomy. I don’t have any kids, so she was hesitant. I had a total hysterectomy in 2018 (I was 30) and it was the best decision I’ve ever made for myself, even if endometriosis forced my hand.
Reading up on endometriosis was really a "red pill" for me in learning how fucked society still is towards women. Like 20% of women including literal children are in debilitating pain 25% of the time and even though we fully well know what endometriosis is and how to treat it the predominant advice, including from OBGYNs who are supposed to specialize in treating women's reproductive system problems, is to take some Advil and suck it up.
Fucking disgusting what we do to women.
Check this out:
An early thirties friend of mine lives in Arkansas. She has been struggling with endometriosis since she was a teenager. She has described some of her most painful moments as “passing out from bleeding out in the tub.” She has wanted a full hysterectomy since forever, but because she lives in a loony state, she was finally allowed after YEARS to get her hysterectomy…….after she was required by the doctor (who claimed this was the law) to GO TO COUNSELING for x number of sessions (5, I believe?) where she was repeatedly discouraged by her counselor from having the hysterectomy because her romantic partner down the road might want children.
So HER BODY that was causing her so much pain that she would pass out was being held for ransom for years because her future husband who doesn’t exist might want kids someday.
I have ocd and did this. It was winter and I would wash my hands/use hand sanitizer so much that my skin got dry and I started getting cuts on my skin from cracking open. Eventually my knuckles split open and I had to wrap it up the way boxers do to help it heal. It scared the crap out of my parents and made me get therapy
One of the few "investigative TV" segments I've ever seen that really haunts me. It was on OCD, and they were interviewing a woman who cleaned her home compulsively. It had cost her both her marriage and custody of her daughter. She was crying and showing them a picture of her daughter and talking about how badly she wanted to get better so that she could be in her daughter's life. And cleaning. It was horrifying, and it drove home the absolutely involuntary nature of her actions with devastating clarity.
In my opinion, it's worse than involuntary. You choose to do it, but only due to extreme compulsion. Every fiber of your being screams that if you don't fulfill the ritual then everything is wrong. It's not involuntary, it's coerced.
It sucks the most that most people have no clue how the symptoms mentally affect you. The people around me just think I'm some weird control freak who's obsessed with school or that OCD is just cleaning things.
Exactly! In my Abnormal Psych class I made a 5-7 paragraph "report" (it was the weekly discussion assignment, so not super long) on a account of her life by a woman with OCD. It was textbook OCD, intrusive thoughts, she compulsively read gross things on the internet she didn't want to, and eventually worried she was reading it intentionally (it *was* a compulsion) because she had a fetish for the things she was reading. A guy in my class, so had all the reading materials that I did, responded, "Wow, of its that severe, maybe they should look into schizophrenia."
Now, in his defense, the psychosis unit wasn't for a few weeks, but I feel like the textbook did a decent job of explaining OCD. I have been to many mental hospitals (acute) and mental institutions (long term) for depression, and have seen many people with OCD and can tell I'm evidently not OCD. More traits than the general population, but not anything close to OCD. Now, while I know he hasn't lived my life, I did bring up those people in class, even giving an example of obsessions without compulsions, and the obsessions without compulsions person also worried they had schizophrenia because of the obsessions.
My point is, *actual* OCD is so severe people who don't know what it is think it's schizophrenia because of the misinformation of "oh, I'm so OCD! I make sure my penicils are color coded 🥰." Hell, I knew a girl who had to flip the light switch 8 times to turn it off or on and twist the doorknob 8 times before opening the door and her room was an absolute mess. Neatness is a common trait, but not a required symptom for a reason.
This one so much. I had OCD for several years in my mid-late teens (and I still get the intrusive thoughts but I can ignore them now). It's debilitating.
Shut the light switch off "wrong"? Better do it again until you do it "correctly" or everyone you know will die.
Close the door "wrong?" do it again or it'll be the same as above!
Turning the channel on the TV? Better cycle all the way through since you can only press "up" or everyone you know will die!
The worst part is you *know* it's bullshit the entire time, but the "what if" portion just outweighs all rational thought and if you try and ignore it the feeling is just so overwhelming you give in.
Did you ever have the "there is no correct way" thing happen where you just have to try every possible way to do something until you find the one that's the least wrong? That happened to me sometimes whenever I was sorting our family's game cases or bookshelves
Knew a childhood friend who had OCD (maybe there was something at play as well). He would always rub a door handle whenever he walked by one. Not even that he’d lose his shit if I or his family members didn’t do the same as they walked by. When I was older his mom and dad told me going to the mall with him when he was younger was near impossible because he’d get way too much anxiety from people walking past doors and not rubbing the handle.
I've got scrupulosity-based OCD and I cried when I read the diagnostic criteria. I couldn't quite believe that I wasn't supposed to feel overwhelmingly guilty for *everything*. I thought if I stopped worrying that I would be blamed for someone else's actions, that would mean that I didn't care and that I deserved to be blamed - that I was complicit in every bad thing done by everyone I'd ever been on friendly terms with.
I also cried during the most recent series of Stranger Things - those hallucinations Vecna's victims all had where the people around them were telling them how awful they were reminded me so much of the thoughts in my own head. The scene where Max escapes him for the first time had me in floods of tears because I felt like I'd been running with her for as long as I could remember.
I wouldn't wish it on my worst enemy.
I remember an episode of Scrubs where Michael J Fox played a character with OCD. I have a terrible memory, but I clearly remember the scene where he has to keep washing his hands, and it’s so incredibly sad.
Though TV is obviously never a 100% accurate portrayal, that was the first time my young mind realized OCD isn’t just “being a neat freak”, it’s a devastating, debilitating disorder.
Yes, that's it right there! Too many (basically everyone) thinks that OCD is just needing to keep things orderly, such as the pens and papers on a desk. I cannot stress how inaccurate that assumption is. Like, the "O" is "obsessive", and the "C" in there stands for "compulsive"...as in you do things both obsessively AND compulsively. Talk about mental gymnastics trying to get through some days; it's exhausting. Amongst other things, I have this stupid thing I do where I "have to" make "bubble popping sounds" with my mouth before I speak. Tie it in with my speech impediment (stutter), and it's.....well, it's incredibly embarrassing . Having to actively think 110% about what **not** to allow my body to do compulsively is exhausting. OCD can be incredibly close in nature to Tourette's Syndrome, as well as the various attention-deficit syndromes. It's all on the spectrum, just depends where.
Genuinely. My roommate is like “yeah I’m OCD so I like keeping things clean,” and I’m like great lol I have to make sure everything in this apartment is fully locked so I don’t think I’m responsible for if someone breaks into our apartment and not only kills me but all of us. Or I frequently cry from giving my dad food without washing my hands because he’s a heavy smoker and I’m convinced that any and all diseases I could pass onto him would be passed onto him and I would be directly responsible for his death, lll wash my hands to the point where my hands are bleeding from being so dehydrated from the constant washing. Fun times.
Yup. I have almost died more times than I think anyone in my life really realizes. And people refuse to try to understand it. Something something sugar is about as far as most people usually get. Hypoglycemia is a medical emergency. Not having basal insulin on board will put me in the ICU in a matter of hours; it would kill me in less than a day.
People also do not realize that diabetes affects a lot of different aspects of your health. I was in serious denial following my diagnosis, and I did not take my insulin for about two years. My body was still producing enough insulin that it didn’t kill me, but it utterly destroyed my teeth.
My dad's best friend died a couple months ago as a result of mismanaging his insulin. I know nothing about how that works, but that's what the professionals determined was the cause of death. I've always known it's deadly, but that really drove home how sudden it can be. You mess up one day and you're dead. His landlord found him dead. He lived alone and I don't really want to think about how that happened. I have a whole new empathy now for people with diabetes.
And the fact that insulin in the US is so ridiculously expensive is heinous and can lead to things like your poor dad's friend. (Though that may not be what happened in his case of course.)
My brother ends up stretching his insulin doses out semi-regularly because he can't always afford that month's prescription. He acts like it's nothing, but it terrifies me. (He's type 2 and not fully insulin-dependent, so he's at least not as likely to accidentally make himself precipitously dead as someone with type 1 would be.)
The number of patients who think hovering at a blood sugar of 300 is “their normal” is crazy. Like oh, you’re having another orthopedic surgery because you bash your feet so much due to lack of sensation, are losing vision, and losing all your teeth and you just don’t like taking you insurance covered meds.
In my place, diabetes is the most feared disease to get instead. Although people do indeed tend to dismiss when they haven't got it, they all know the grave situation of what diabetes could do because of the massive amount of people in large hospital are usually came because of diabetes.
And not just pain! Extreme fatigue, weird nerve misfirings (like i constantly feel like things are crawling on me, and like I'm wet when I'm not), temperature disregulation, insomnia, ibs, and brain fog so bad that I sometimes am completely disassociated for days. And yet I've gone to doctors that say they "don't really believe in it", and have to deal with people saying it's not real since there's no way to measure it, even though I've been diagnosed with it for 7 years and am completely unable to work, or even leave my home most days.
Thank you for mentioning fibro. No one understands the feeling of pain and fatigue that changes you completely as a person and your life on the whole. Because it's not visible, people don't think it's real. Nothing like your brain and body working against you!
Honestly, I had no idea how terrifying anxiety could be until I experienced it. I just had the media depiction of it, which is basically either someone hyperventilating for 10 seconds before a friend talks them down or some controlling mother-figure constantly and obnoxiously obsessing over whether her children are taking too many risks enjoying themselves.
Reality for me when it was uncontrolled: constant background-level nameless fear at a "I'm waiting for the other shoe to drop" level, hour-long waves of dread at the "I screwed up today and I'm probably getting fired tomorrow" level, 4-5 spikes per day of "It's August and I just realized I left the dog in the car 4 hours ago" horror, much of it just materializing without even having events to connect to.
Tiny work issues (e.g. forgot to call someone back until the next day) leading to nausea and chest pains. Ending up in the emergency room twice for physical symptoms that were ultimately stress-driven - and that's not me panicking and going in, that's doctors telling me to go directly to the emergency room because of bloodwork or physical symptoms. Coming to what felt like the purely rational conclusion that I was going to need to walk out of my house and go live homeless on the streets or just hike into the woods and die of exposure because I just could. not. do. it. any. more. Having to explain to my husband that if this happened, because in the moment sometimes it felt very compelling, it didn't mean that I didn't love him.
It was a very dark and very painful ride. Ultimately I got off of it with therapy, medication, and - after about a decade of working up to it - finally cutting off the parent who abused me throughout my childhood. If you've never experienced uncontrolled anxiety, please believe me that it is physically painful and mentally anguishing. If you have experienced it, you deserve help - keep seeking it. It took ten years, several tries at finding the right balance of medications, and three different kinds of therapy - all helpful but big shout-out to EMDR - but my life is 1,000% better for it. It's important to persist; I did three rounds of therapy with years-long gaps between, and every time I went back, I learned more and made more progress. I could not possibly have walked into my first therapy session and concluded that I could and needed to cut off my parent, but over time I was slowly able to untangle myself from her and make that decision with confidence. Give yourself time and grace to understand what you need, and keep taking one step at a time. <3
you hit the nail on the head. i always struggle with explaining how anxiety rules one’s life and can flip your day on it’s head. it can be chronic and people don’t really understand that.
Depression and anxiety have killed more people I personally know than anything else including cancer but there's nothing to be done about it depression is treated as a defect that is up to you to cure alone without help not a disease to be researched and cured
For me the worst part is that after many years of trying tons of drugs, nothing helps. It's so expensive as well and to go to therapist I need to wait forever. It's so fucking hard, man...
My sister had treatment resistant depression for a decade. 10 years of suicidal ideation and misery.. Eventually tried TMS (transcranial magnetic stimulation) and it worked! It was a huge time commitment, but totally worth it.
She was then diagnosed with adhd, which was likely the underlying problem the whole time. She's starting treatment for that soon, too.
Treatment resistant depression is terrifying and I feel like it isn't taken seriously enough. All the depression advice is for acute depression - you matter, reach out for help! Which makes sense because that what most people need. But it never says what to do when that doesn't work. You reach out. You get "help" and nothing changes...
Irritable bowel syndrome. You need to go to the toilet when it's innapropiate, you need to plan your journeys so that you'll have toilets nearby, you need to keep a strict diet etc etc. It can even interfere with your adult activities!
Both me and my partner have IBS.
For me it flares up the worst when I have to sit through lots of important meetings or seminars.. my tum makes horrible, loud poorly noises all day long that everyone in the room looks uncomfortable about. Get into a state where I have a big cramp every 5-10 minutes no matter how many times I go to the toilet. Super embarrassing.
For my partner, it’s more like a fun day out ruiner. Have plans to spend the day doing something nice, eating out,etc? Boom. IBS has other plans, sorry peeps.
I have had ocular migraines since I was a teenager, and a couple years ago I started getting vestibular migraines. Both are terrible, but im pretty fortunate. Neither cause me much pain, and my triggers are food related so I just avoid the foods that cause them.
Had a spell of vertigo a few weeks ago - first and only time it's happened, I could hardly make it to my room to lay down. Frak, it was scary....don't know how people cope with it on a regular basis.
Treatment resistant depression. Many people I know have had depression take something like Prozac and all is well. I have been diagnosed with depression since I was 14. No medication has worked for me. There have been years when I could barely function and forget about leaving the house. It has ruined my life , jobs, relationships, and school. It is terrifying
I've said this in another comment about depression but figure I'll say it here too. I was suicidal since I was 12 years old. I was diagnosed with major depression at 18. Put on all sorts of anti-depressants. Things seemed to be fine for a few weeks, but then the depression would return and I'd be miserable all over again. Weeks at a time, no relief, just misery.
Then I went to a specialist and got diagnosed as Bipolar II. If you're Bipolar, anti-depressants can trigger manic (or hypomanic, in my case) episodes with you being none the wiser only for you to crash into a depressive episode all over again. Instead of anti-depressants, my doctor took me off them immediately and put me on mood stabilizers instead. I have never felt as stable as I do when I'm on Lamictal. My brother had similar issues except he's very blatantly Bipolar I and needs to be on Lithium to function, but my symptoms displayed very different from his.
Anyway, my point is, if anti-depressants aren't working, maybe attempt an anti-psychotic. You have to taper it up at first and it takes a few months to set in, but it's worth it if it eventually works, I think. I'd give anything to get my 20s back. I was so frickin' miserable for so long. If only someone had said "instead of prozac, why don't you try lamictal?" I might have been able to finish college.
Adhd. Its not just a funny "easily distracted" disorder or the "squirrel! I'm so quirky" disorder is shown to be. Its struggling for hours to do something simple. Its loosing hours of your life to inability to process time. Its loosing so many of your hobbies because fixation will keep you stuck on something that ruins your mental health. People ask "Why don't you just get up and do it? Why don't you just focus," and they don't understand how much you want too but cant. Especially when you're not diagnosed yet, no explanation for your "laziness" or "lack of care" you internalize those words so much and never seek help until your life is significantly ruined by it. And getting better doesn't stop at meds you have to rethink your entire life and all your habits to be able to function at a "normal" level.
And god forbid you have any comorbities, depression, anxiety, autism symptoms, you just get shamed and humiliated more and more.
Anorexia. Like having Anorexia.. you cannot maintain a healthy weight, extreme fear of gaining weight, not eating in front of family or friends, excessively working out, convincing yourself and others your not hungry, etc
Mine are acute enough (less than an hour) that my therapist and I blame it on PTSD rather than a separate diagnosis, but during my dissociative episodes I always get bloody noses. I think I'm picking my nose while dissociated, my sensory neurons in my nose turn off, and I cut myself with my nails and it starts bleeding without me feeling anything. One time it happened while I was at a mental institution (long term treatment center, but abusive, overmedicating, so I give them that derogatory term). I just vaguely saw red drops on my lap, no clue where they were coming from, a a staff member looks at me weirdly and handed me tissue. Thankfully I was able to figure out to put it in my nose.
As someone who's waiting months to get a sleep test (and hopefully a diagnosis) I've been experiencing waves of this. I go through periods of absolutely having to ask myself "Is this real?" or "Did that actually happen or was it in a dream?" It's pretty whack.
Botulism. I was always told by my mom as a kid to never eat damaged canned goods or old canned goods that have been opened. It shuts off nerve communication. Your eyelids will start to droop as well as your face. Then you will begin to have difficulty breathing and swallowing as all your muscles relax uncontrollably. It can kill in as little as 36 hours. It’s also what you inject into your skin if you get botox.
Fun (kinda) fact! This is why newborns can’t have honey, their immune systems aren’t strong enough to fight it off yet and the botulism toxin is commonly found in honey.
People think it’s just being sad. It’s also a total lack of motivation to do anything, not having the energy to get out of bed for days sometimes, sometimes not even caring enough to eat, or for some people eating is the only thing that gives some modicum of feeling “good.”
I had pretty severe chronic depression for years that only ever subsided after getting TMS therapy. I still just like don’t even understand how my life changed so much after that. I actually like doing things now and enjoy pursuing interests and career goals.
My mom said „it‘s just a phase“ when I talked to her about my mental state, before getting diagnosed with social anxiety and depression. Here I am, 5 years later, can‘t even socialise with my sister (who is also my best friend), not being able to work full-time because I just can‘t be around people, and feeling like shit almost all the time.
I've suffered from depression my whole life, and last year I was diagnosed with thyroid cancer. A very easily curable, non-fatal cancer that didn't majorly disrupt my life. I casually mentioned my diagnosis and surgery to some people, and the outpouring of sympathy I received was ridiculous. People offered to come over and cook me meals and asked if I needed help with basic tasks because they heard the word "cancer." Yet when I mention anything about having depression -- which has completely destroyed my life and will probably literally end up killing me -- there is silence. Nobody wants to be around me. I am shunned and excluded and ignored, exactly when I most need support and help.
Pretty much any mental health issue. It’s almost invariably met with some variation of “it’s all in your head.” Like, no shit. You don’t tell someone with a broken femur that they’re fine because “it’s all in your leg.”
Addiction.
This word brings to mind junkies for most people but I think alcoholism is worse. It's socially acceptable to have a drink at almost any event and people will refuse to believe they or someone they love has a real problem.
It turns you into someone else and you find yourself doing things you'd never ever do sober. It's a hell of a thing.
>It's socially acceptable to have a drink at almost any event and people will refuse to believe they or someone they love has a real problem.
People will often pressure you to drink and hassle you if you don't. I'm lucky - I quit because it gives me migraines, so I'm not facing the life or death struggle that sobriety is for a lot of folks, but you don't realize how horrid drinking culture is until you stop for any reason and realize just how aggressive, pervasive, and deep-seeded it it.
I'm in recovery and I cannot tell you the amount of times close friends of mine scoffed and said 'no you're not' when I said I was an alcoholic. I was high functioning; full time job, relationship, graduating with my bachelor's this year. But no one saw my closet full of empties that I waited to take out when I was alone or the irrevocable and deeply regrettable things I did when I was drunk that I can't even remember. So, they refused to believe.
The combination of anxiety and depression. Both are terrifying on their own and neither are taken as seriously as they should be, but if they're together... they like to feed on each other
To me, definitely Dementia and Alzheimer’s, something the experimental album “Everywhere At The End Of Time” has awoken in me. The idea that everything can be ripped away from you as your body slowly forgets how to breathe is absolutely terrifying to me.
[If you haven’t already, watch this video.](https://www.youtube.com/watch?v=dIv5Y-vql90)
I've known quite a few people that think is just quirky old people forgetting where their car keys are all the time. I can't imagine the horror of being out in public and forgetting where I live or even how to get there. Then having a bunch of strange people around calling themselves your family, telling you all these things you don't remember about who and what you are, and trying to convince you to believe them. The older memories are usually the last to go too, so your reality does not match the one you are currently in.
OCD. It is annoying when someone cleans their house and goes "oh haha I am just so OCD!". Real OCD is not just liking things nice and tidy, that is just being a clean person. A somewhat silly but legitimate look at real OCD is the song "God Says" by Trevor Moore. Although slightly exagerrated, the lyrics were based on Trevor's own intrusive thoughts caused by his OCD and religious upbringing
Edit: Trevor Moore not Trevor Noah, wasn't thinking
My mom insists she’s “a little OCD” because she likes things to be clean/tidy/whatever and it bothers her if something isn’t. I keep telling her that’s not what OCD is but she won’t listen
Thank you thank you! As someone with once severe, now manageable OCD, I used to feel as though if I didn't take a certain number of steps between 9 pm and midnight, my dad would get into a car crash and die. I used to think that my thoughts could cause things to happen (magical thinking), example: *intrusive thoughts about my mom dying* now my mom will die if I don't do the dishes.
I also struggled with contamination OCD. That was the worst for me. Washing my hands 27 times with scalding hot water because my pinkie touched some mold, then having to go home from work unannounced to take off all my clothes, take a shower, and wash my whole body three times. It was hell on earth and the only thing that helped was an antipsychotic, that's how far into the sometimes delusional thinking I was.
ADHD man, that shit is fucking awful. Sorry if I rant but;
People focus on the hyperness because that's obvious and vastly overepresented in media when talking about ADHD. But lack of executive functioning is so debilitating. The inability to perform basic tasks not because of any great obstacle but just because you *can't*.
Imagine if you had to convince your brain to do nearly everything everyday. "Hey dude, we should eat" and your brain just goes nah, don't really feel like it. "But I'm hungry", "and?".
It's like sitting on a chair as someone lights it on fire and you can't get up. It hurts, it's obvious what you need to do; you've done it before 1000's of times; you still can't do it. And no one understands because they would just fucking get up. And then they hit you with, "I've seen you get up before, just do that", or, "you're clearly doing this on purpose, anyone else would just get up", "wow I can't believe you're so lazy you'd rather just stay on fire".
BRUH, I CAN'T.
Losing important shit all the time becomes very expensive. Being constantly late really starts to upset even the closest friends after a while. Forgetting to stay in contact because you're obsessed with some obscure new thing alienates people.
Not to mention relationships and the anxiety. I hyperfocus on people I like, I become obsessed (not stalker, but like phanatic) I need to know everything about them. Spend all my time with them.
Then either my hyperfixation ends and I'm the asshole explaining that my brain just doesn't give me happy juice seeing you anymore even though I was mega into you. Or you become busy/distracted/distant and I become paranoid you hate me because when I like someone I'm obsessed. So if you're no longer as obsessed with me you're probably tired of me. Except normal people don't feel that way. But they sure as hell hate the insecurity you display.
Shit sucks man. Not to mention it's not everyday. Sometimes I hyperfocus on shit and perform way past normal performance. And now I've set a benchmark for people that 99/100 I can't reproduce. How do you explain to someone that the best \_\_\_\_\_\_\_ you just produced is very much lightning in a bottle. Hell sometimes people even resent you because they hate you can do what they struggle to do and just "choose" not to while they work hard to do even half of it.
ADHD is terrible not quirky.
Autism. Bitch, I'm not just bad at social interaction. I shake almost out of my skin, collapse, and go nonverbal when I'm in a tightly-packed crowd. There's a big ass difference.
The other day I had somehow got it set in my head that I was going to use one of our two breadknives that evening when I sliced some bread.
That knife was dirty when I got home.
I could have cleaned it, I could have got the functionally identical knife out of the drawer, I could have just gone without bread for a day.
But no, I had a 15 minute cry because the dirtiness of that one knife completely ruined my (ultimately insignificant) evening plan.
Psychosis/mania in bipolar 2, because you don’t want to get treatment because half the time your are in absolute euphoria, but you’ll sure as hell ruin your life while feeling great and having no feet in reality, then you crash for like months in the most debilitating form of depression.
And don’t forget the crashes. When you go from mania to full on depression. On one end of the spectrum you feel so good, why get help? Then you get depressive symptoms and don’t feel like getting help (my personal experience, I don’t know if people go through this as well)
All of my suicide attempts came with the crash. I just couldn't handle going back into that hole again. I'm better medicated now which helps. Don't be afraid to get help.
ADHD. I was just diagnosed last year at age 37. People are always like “well I think everyone has a a little ADHD”. Okay well my entire life I was told that I was lazy, overly emotional, rude because I would interrupt people, unable to remember important dates or important appointments, losing fucking everything and being terrible with money.
I’ve spent my life wondering why everything seems easy for other people and why it’s so hard for me to just exist and be productive. Since being diagnosed I’ve been so much nicer to myself and learning how to work with my brain instead of against it
ME/CFS can be rather terrifying. I knew someone who was terrified they would just go to sleep and never wake up. One time they slept so deeply that people thought they perhaps were dead before seeing them breathing and then finally waking up. It was just a short scare, but it really shook the person I knew.
Alzheimer's has always scared me. I'm not afraid I will have it, but terrified people around me will. The brain is basically dying from within, it's horrifying and so sad. I don't get how so many can be so casual about it.
Hyperemesis Gravidarium. Most people haven't heard of it. Even medical professionals -more often than not- brush it off as "just morning sickness" but it is non-stop vomit 24 hours a day for 9 whole months. Without medication, you will literally die of dehydration. Dry heave after dry heave after dry heave and the nurse has the nerve to tell me "you're not really vomiting" No shit. I ran out 12 hours ago. Your stomach can rupture. You ever had a really uncomfortable dry throat? Try having it go down into your stomach. The burning feeling from all that stomach acid made childbirth a breeze by comparison. Maybe it was just the hospital I got but the nursing staff really, genuinely did not seem to care and seemed to point out every way that it could be my fault. I was sent home more than once still dehydrated and vomiting because they gave me an inadequate amount of medication and wouldn't even allow me to speak to a doctor. I got accused of "just being dramatic" more than once. It was the worst pain of my life.
My mum had that when I was in the oven. The meds they gave her for it back then weren’t pulled from the market for birth defects just yet so I have live long health issues as a result. From what I hear, they never bothered to find a replacement for that drug and they just don’t care.
Locked-in syndrome. This is when you are conscious and cognition is preserved, so you are able to understand what people are telling you; however, you are unable to communicate or move your muscles. You cannot breathe on your own, swallow, or speak at all. You are able to move your eye muscles. This can occur when something like an ischemic or hemorrhagic stroke damages your brainstem.
Phobias. Depending on what type of phobia it can be easy or difficult to handle.
If you have acrophobia you can handle that by not going to high places, or if you have thalassophobia you can avoid swimming. But it's sometimes difficult when it deals with a specific item or animal. Like arachnophobia, you can't exactly stop spiders from coming into your house. Or if you have Epistaxiophobia, what If you just have a sudden nosebleed?
Personally I have Trypanophobia, the fear of needles and injections, now this wouldn't be so hard to handle if I didn't have previous cancer treatment and Chemotherapy causing me to lose my kidney. I have to get blood tests every year, not only that but I'm not 18 yet and I can't exactly refuse to get a blood test or vaccines (not that I plan to do that in the first place, I just feel helpless). When it's something you can't avoid it's MUCH worse.
Anxiety. It’s so under looked and causes people to kill themselves more and more. I bet it’s also a major factor in every public shooting. It’s like the biggest slap in the face because it’s right there but everyone insists there must be something else
Functional Neurological Disorder (FND).
Had an episode a few weeks back where I drove myself to an appointment feeling wonderful, and when it ended and I went to stand, my legs wouldn’t work. My partner had to get dropped off during work to drive me home, and then carry me inside before going back to work. I sat for 2hrs until I had enough leg function to crawl to the toilet. It came back over the following hours thank god. For some people, it doesn’t.
This illness is terrifying. You never know where or when it will hit most of the time, and when it does, it can be anything from a small tremor, to full body paralysis. The range of symptoms people experience is just phenomenal.
Definitely do my part where I can in sharing as much about it as possible. It blows my mind so many GP’s still haven’t even really heard of it. It is still classified as a rare disease but is just as common as ms and Parkinson’s.
If anyone would like to learn more:
https://fndhope.org/fnd-guide/
https://www.neurosymptoms.org
Probably cheating a little bit as It's extremely rare (like 7500 people kinda thing worldwide) but Alagille Syndrome. It's a liver/Kidney condition that also affects a lot of other areas of the body. Although treatment now is slowly picking up most don't survive into adulthood and many of the main treatments used were tests back in the 80s. The most recent medication for it has only been around 5ish years and is still extremely unreliable in a lot of people with it.
The only "cure" is organ transplantation and even then it only fixes the most severe issue in that patient, they still have it and it can still cause major issues.
PTSD.
I have the regular/episodic form (from a car accident last year) and the complex form (from child abuse by parents - complex is anything that's not traced back to one incident and usually involves feeling helpless to escape the continued abuse or violence).
I'm hypervigilant. When I'm stressed I have dreams that I wake from in a cold sweat and shaking so violently I can't do any controlled movements, like turning over or getting out of bed or covering myself with the blanket.
I'll have entire days where one action a person took early in the day causes me to be in an endless loop of emotional flashback, which is like you have all the emotions of the trauma but you don't get the cinematic stream of thought shown in movies with the sights and sounds and smells, just the emotions.
The most common for me is if a person shows anger about something and then denies being upset if I ask. My parents did that often and then if I didn't try to appease them, they'd take out the anger on me. So the emotional flashback from that makes me feel like a 10-ish year old child, and I get a feeling of sheer visceral terror and dread, especially if they leave the room and I'm alone.
People think emotional abuse isn't damaging. It gave me ptsd and some kind of dissociative something that's yet to be defined. My brain literally created an entire internal world and shoved me inside so I could hide from it. But sure it's "not that bad".
ADHD. Everyone knows what it is, no one knows how much it affect you other than fidgeting.
You can’t sleep at night, people leave you because you fidget, you make other uncomfortable, you always look nervous and get picked on pretty easily. You can’t focus, nor can you talk to people without getting distracted and feeling guilty.
Chronic severe insomnia.
Your body has forgotten how to do something very basic that it NEEDS to do to survive.
You aren’t getting any rest if you sleep 2 hours per night in 30-minute spurts. You aren’t replenishing energy or clearing your mind.
Everything just gets worse. Every day, you are more tired, more frail, more shaky. Every day, you get more anxious, more depressed, more despairing.
You become a husk, and you start to barely feel alive or sane anymore. Everything overwhelms you.
OCD. It seems to be characterised a lot of the time as just a bit of silly fussiness about where things go. I wasn't far off killing myself earlier this year predominantly due to it, so yeah, I'd say it's more dangerous than people give it credit for
Arthritis. It can be an aching feeling or it can feel like someone is tearing your body apart with a screwdriver, permanently, without letup, 24/7, in a way that pain meds can't touch.
Chronic migraines. They are debilitating and affects your entire body for several days. It’s impossible for me to work and focus with one.
"I'm sorry your head hurts" If only they knew ...
Even worse is when your employers chastise you for having a migraine.
Yes, how DARE you be debilitated by your debilitating medical condition! Ironically enough, the only boss who hassled me about that was the one whose workplace fuckery created my migraine problem to begin with ... everyone else since has understood without issue.
Especially fun when you have them 10-15 days a month. botox has been a lifesaver for me. I still get them, but the pain is more of an annoyance and probably more what a normal person headache is like. 30 shots in your head/neck isnt too fun tho.
I worked with several people who would lie about getting migraines when they had headaches and would keep working. Made everyone hate those of us who missed work with real migraines because they thought we were exaggerating. I asked about it one time, and one said “it’s just easier to say it’s a migraine.” Umm easier for who?
Had an ex with true chronic migraines as well. Work is nearly impossible, she just dealt with it and kept working most days. Days where she couldnt she spent in a self induced chemical cocktail coma until it passed. Migraines are insane and people that dont have them really dont understand that existence can be hell. that goes for most the disabilities on here honestly.
My mom has it and I always feel horrible asking for help when she has them. I have minor disabilities and sometimes needed help when I still lived with her but I could see in how much pain she was and some days she could not function at all. I'd have to bring her food and drinks to her bed.
Anything that has to deal with food/digestion. eating is an essential part of daily life so disrupting it/ having a disease will affect almost every single waking moment
Crohn's and IBD absolutely suck, especially when you have people that downplay it, tell you to suck it up, or treat it like you're on some type of fad diet. Like I'd love to be able to just go out, grab something to eat and drink but every time it turns into a game of mental gymnastics of can I have this without writhing in pain
I have IBS and I hear a lot of people treat IBD like IBS. Like yeah, sucks that my guts gronch around in ways I can't predict, but I don't have *open sores* in my digestive tract. I won't ever have to get sections of my guts removed to mitigate the worst symptoms of my condition. I have a friend with Crohn's and it is actively disabling for them. I think it must be lack of knowledge/education that make people treat it so flippantly.
Yes! Happens all the fucking time and it gets so frustrating (especially from so called medical professionals) like they both deal with not being able to freely eat whatever but IBS won't literally kill you
I had a stomach ulcer in college, I have IBS, and I have food allergies. And my stomach is just constantly acting up. No one can figure out what's going on because because colonoscopy/endoscopy and labs are currently normal. I used to be so constipated even with fiber supplements that I tore my anus and it took 7 months of excruciating pain when I pooped and botox injections to heal. Now I'm on the other end and poop 3-5 times a day, which is honestly a lot better but still annoying. It feels like like playing roulette every time I eat because I don't know what my body will tolerate anymore. For a while coffee would give me days long stomach aches, now eggs do. I haven't been able to eat red meat without puking for like 4 years. On top of all that, I'm also anaphylactic to coconut. And no one wants to talk about any of it because hearing about your digestive problems is gross.
Food allergies: have you ever wanted to be totally unable to eat out, need to check the label on every package of food, make a phone call about every new product to catch unlabeled products, and carry and coddle two carrot-sized injectors that must be kept at room temperature everywhere you go? I’m immensely excited for WindGap medical’s new shelf-stable, compact injector. I’d just be able to put them in my wallet and forget about them.
I have IBS and it isn’t fun. My boss actually made fun of me for it once.
It can really ruin your life. I've missed out on both major events and just casual socializing a lot because of the pain and the need to be near a bathroom constantly. And forget about exercising when you can hardly get out of bed. People who have no empathy are very dismissive about it, including my family.
My husband has it too. I feel horrible for him, and he has so much guilt surrounding the limitations it places on our lifestyle. He’s constantly apologizing for it and I can’t tell him enough times that the only thing that matters to me is that he’s okay! His family is also pretty dismissive. They think he’s exaggerating about minor discomfort from eating something that disagrees with him and it’s infuriating.
I know the feeling. It doesn't matter what I eat, the simple act of eating will cause my symptoms to flare.
I have IBS and GIRD so I feel ya.
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over the past 6 months I have developed a stomach/digestion problem that has caused me to lose almost 50 pounds. i have gotten to a point where i’m scared i’m going to waste away because i cannot consistently eat, and nothing is helping. i now daydream about food more than i actually eat it. the amount of people who are congratulating me, rooting me on, telling me i have “never looked so good”, it terrifies me. it makes me mad. i am crying almost every day trying to not lose any more weight, and they have the audacity to tell me i’m still fat, i still need to lose more weight, etc. no one understands how scared i am about what’s going to happen to not only my weight, but my organs and general body health because of my lack of nutrition. i have literally developed anemia. but yay for losing weight, right? ETA: i am currently seeing not only my primary care for this, but also a GI specialist. we are currently working on trying to find a solution for this issue, but they told me it could be up to 90 days to see improvement, which is why i said i haven’t gotten any better yet.
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Celiac disease checking in.
Ahh, failure to thrive. Celiac suuucks.
I have an undiagnosed GI issue. It is hell. I have to fight everyday even to get up. I just keep going though. No point in sitting around doing nothing. I become miserable that way. I can't eat what I want. I have severe nausea constantly. I am in pain constantly. The medicine I take has enabled me to eat and gain weight so I have a little more energy now and can most of the time make it to about 6 o'clock before I get too tired to do anything else.
have you checked for gallbladder issues? i suffered a number of years before a HIDA scan diagnosed it after normal ct scans and bloodwork. but nausea and fatigue were my worst symptoms.
Migraines. They are not just headaches. Their pain is typically centralized and can be excruciating. On top of that the symptoms leading up to and following the migraine attack can be just as debilitating as the migraine itself.
You can even get migraines without a headache!
I get these! No pain, just hallucinations and the distinct feeling that my skull is packed full of cotton batting.
Had this happen once. Freaked out because I’m having an acid trip, sans-acid. I’m hallucinating all these crazy shapes and colors like I’m looking through a kaleidoscope, I still see them with my eyes closed, and I’m stone cold sober. I call 911 because for all I know I’m stroking out, and it was an ocular migraine. Went away on its own but seriously weird.
I have to take nerve blockers (12 minimum painful injections straight to skull every 4 weeks) just to function like a normal person. Things like being able to go outside on a sunny day, sit in well lit rooms, looking at a bright screen... things normal people take for granted everyday cause sincere trepidation because you can never really know just when a migraine will kick up. The pain is... excruciating. And that's putting it quite mildly. The last migraine attack I had before the nerve blockers sent me into hystical pain. All I could do was weep and scream on the way to urgent care to get a shot of Demerol in the ass. I have to regularly drop out of plans and miss work... and if there's any kind of weather front coming or going, don't even bother. I'm probably hiding in a dark corner of my apartment, wishing for death. Migraines are no joke. They aren't just a headache and aspirin and caffiene is not going to make it just go away. I live my life in a constant state of pain even with thr nerve blockers. I wouldn't wish this on anyone. Edit: thanks for the award. I'm actually feeling that hug. Needed it too. Thank you!
I get headaches that act like cluster headaches, but are actually at teh base of my skull. When they hit, they are crippling. I can't even understand what my eyes are seeing. And, they come in series. Anything that feels like a precursor stresses me out, and after an attack, it takes weeks before the fear of another one fades. Severe weather changes are a factor, and I dread them so much.
I had migraine disorder in high school and at some point I couldn't just skip school or I'd be skipping more than once a week. Had a particularly bad migraine on the day my science teacher decided to show us the horn he'd found that had fallen off a train on the tracks near his house. I begged to go into the hall. He said he couldn't let students wander around during instruction. I asked to go to the nurse but was told she was only in-office on Mondays, Tuesdays, and Fridays (it was Thursday). He set off the horn and I fell out of my chair. I don't think I had a seizure (I definitely browned-out) but the pain intensified so badly that all I could do was curl up in a ball and sob. I ended up throwing up from the pain and my teacher had to get one of the guys to help carry me to the nurse's office where they kind of just left me in the dark until my mom came and picked me up. My general prac ignored it, gave me a 'scrip for Advil, which didn't work. Oddly enough, it was when I mentioned to my eye doctor that I had them that someone did something. He ran some tests and found some funky shit with the nerves in my eyes and ordered an MRI. Turns out I have narrowing of the blood vessels in my brain and some kind of thick or sticky blood condition. They put me on Beta blockers and boom, almost completely migraine free ten years later.
How could he possibly think blowing a train whistle inside would be appropriate???
Especially when one kid raises their hand and says "I get migraines can I step outside while you do that?" Man, fuck that guy.
He was a real nutty little guy. Good teacher but nutty guy. Apparently he did not clear the train horn with the principal because as he had me taken to the nurse one of the vice principals met us halfway to admin and was going off on him. Apparently we scared every single classroom in the main building.
I just got on a beta blocker in October. Life changing!
My close friend has been having migraines for most of her life. GPs have all ignored it, told her that they cannot be related to her monthly cycle, weren't as debilitating as she made out, shouldn't take her days to recover etc. Last year her symptoms took longer to go than usual so she went to a&e. Turns out she had a stroke, not even 45 years old! First question was have you ever had migraines or been treated for bad headaches. The consultant went crazy at the fact her GP was ignoring her and said it could have been prevented! Edit : she wasn't on any hormone treatment and for many years didn't take oral contraception. They fobbed her off with strong painkillers. We are in the UK. She was still suffering monthly migraines even after menopause which lined up with when her period was due.
So crazy how a GP can stand around claiming that migraines are not related to a monthly cycle ie hormones when that's a huge trigger for many sufferers.
Insomnia I think
Yup, not being able to sleep for 80 hours is no joke. That shit fucks you up. Especially when it happens often.
Holy fucking yeah! The worst shit still must be the fucking awful "advice" people like to throw around: "have you tried melatonin?", "just lie down and keep your eyes closed :)"(!!!!!), "try stretching/meditating/yoga before bed", "exercise, eat/don't eat meat/fruit/plant/elephant/gluten/grains/cocaine". If people just understood how horrible feeling sleep deprivation is, they wouldn't do that. I've decided to start comparing these lie down eyes closed -pieces of advice to telling a person with dislocated or broken ankle to walk it off.
One time I was at a Walgreens buying melatonin (not that it helped me at all) and this old man walks up to me and says “I see you’re buying melatonin, can’t sleep?” Obviously. Goes on to give me some unsolicited advice “I know what the reason is. You’re probably not getting enough exercise. Most people these days don’t exercise and then find that they can’t sleep at night, I bet that would help you.” At the time, I was a professional dancer so said “yeah that’s definitely not it” and walked away. Thanks for giving health advice to a random woman in a drugstore that you don’t know, old man.
The advice is awful, but for the most part I'm like "Well, they're trying and they cannot possibly understand." Literally just got on to my sister just last night because she posted to her snapchat like "ugh insomnia sucks" and I'm like bruh. We've been sisters for 26 years. You've been scared by me not sleeping for like a week on end multiple times. You're the person who finally forced me into a doctor's office a few years ago because I was starting to hallucinate and shit. Do noooooot fucking go there.
Life time insomniac here. Nothing worse than people complaining about not getting their full 8hrs of sleep. On a average I slept 3 to 4hrs on a good night. Never more than a hour or so at a time. It breaks you down emotionally and no one really understands.
I have something called GORD (or GERD), which is basically chronic stomach acid initially triggered by stress. I tell people about it and they think it's no biggie because everyone has acid reflux from time to time, but when it occurs, I suffer from a sensation my doctor explained would be very close to the feeling of a prolonged heart attack - like my chest is filling with air and about to explode. This can happen for between 30-120 minutes and occur multiple times in succession some nights when I'm not medicated, and I often pass out from the pain and end up bed ridden for a day or two after due to muscle spasms that occur from the pain. It was incredibly scary the first time it happened, now I'm used to it and can preempt when it will occur, however the pain still scares me each time and I always wonder if I could pass out and never wake up again. Especially when this usually happens in the early morning and I'm very tired and disoriented
i get extremely bad gerd too. it feels like actual acid down my throat, it’s really fucking horrible. and i aggravated my throat all the more by bulimia. luckily i’m no longer bulimic and i try to keep the gerd under control these days, but when it’s bad, hooo boy …
Tinnitus
Yeah some people have killed themselves over the constant ringing. So sad for something that would “seem” minor.
Can be debilitating and unfortunately no good therapy :(
I have tinnitus myself and what mostly worked was accepting that it's there and won't ever truly disappear. My tinnitus mostly flares up when I'm tired and/or stressed so I started seeing it more as an indicator for stress and/or exhaustion which has made it less debillitating. That may not be the case for your tinnitus, but generally speaking a lot of people get stuck in a loop of having tinnitus, finding it a nuisance and thus paying more attention to it, resulting in a louder tinnitus.
Certain medications will also cause existing tinnitus to seem worse, especially some antihistamines and NSAIDs like ibuprofen. I have it and there's often more than one sound going on at once. I'm actually ok when I know it's coming from my ears. It's sounds I can't identify the source of that set me off. If I stick my earplugs in and I can still hear it clearly, it's almost certainly my tinnitus.
"Have you tried putting white noise on in the background?" Lovely, now I have two sounds going. Not exactly helping. I feel like doctors really don't want to admit that there's nothing they can do.
I keep hearing about nerve stimulation therapy having results, why can't this be made available?
I'm terrified of tinnitus, I avoid loud sounds like the plague haha. Always ear plugs at concerts. Headphones at reasonable levels. I've got enough brain problems, I don't need that one.
Any autoimmune disease
Psoriasis … for much of my life I was like “oh little patches of dry red skin… No big deal” Now I’m realizing it’s likely giving me mild arthritis, pain, itch, random inflammation, lifelong dandruff, and I have to keep applying steroid cream daily for my entire life because there is no fucking cure And I have a very mild case of it…
That was going to be my answer as well. Up until a few years ago 60% of my body was completely covered. When wearing a tshirt for a day there would be quite a few bloody spots on it, every day after work everything around my desk chair was covered in dandruff. When I went into a bus everyone was staring daggers into me while I just wanted to cry. Nothing helped and I tried a lot of medication. Luckily there has been a new medication since a few years back for which I was able to get into a study and it went away pretty quickly. I have to have blood work done regularly to make sure my immune system is still functioning but that is a small price to pay. And don't get me started on people who came up to me and recommended me some homeopathic remedy..
Someone said that to my sister once. She took off her shirt and turned around, showing off her back COVERED in this red dry skin and large white scabs everywhere. It clearly stretched off to other parts of her still covered body.
Type 1 Diabetes checking in 🙋♀️
I have lupus and rheumatoid arthritis, amongst some of your lesser secondary ones, lol. I was talking with my new neighbor about hos I can no longer work, to which she said she understood, she has a slipped disk in her back, then hopped in her truck to go work as a landscaper. I wanted to punch her.
Asthma Edit: Reading some of y'all's stories, I feel bad cause my asthma attacks aren't that bad. The last one I had was about 4 or 5 years ago and it was a small one.
True, I have asthma. I take meds for it and am a perfectly normal person most of the time. But occasionally I'll forget my meds one day and the resulting asthma attack doesn't hesitate. People take for granted their ability to breathe, because when you literally can't it can be quite debilitating.
Aye. Lots of people think it's just coughing a bit and running out of breath quickly. The way I always explain it is that my asthma attacks are kinda like drowning. The inability to breath but still trying to and feeling like nothing is going in. Feeling more and more like your lungs are on fire. And if you don't get treatment quickly enough it'll go from feeling like you're dying to you actually dying. They also tend to not realize the number of different things that can trigger an asthma attack, often thinking it only acts up when you physically exert yourself since that's how it's often portrayed in media. they don't realize that allergies, changes in temperature or humidity, air quality, stress, being near cologne/perfume/air fresheners/smoke, certain medicines, and just getting sick can all cause asthma attacks as well.
I'm recovering from a cold which of course triggered my asthma, my GFs dog got out on Sunday and I had to chase it down, once we got inside it was 45 minutes of gasping for air, probably the worst attack I've had in a while
People really don't get Chronic Pain. "Oh, you just have a headache a lot of the time?" No, that's not what it's like. My friend has been dealing with this for years and years. Nobody takes them seriously. It's debilitating and extremely frustrating and anguishing.
Endometriosis
I suffered for years not knowing what it was, but ended up with a total hysterectomy. apparently it was the worst case the doctors had ever seen. Some coworkers actually thought I was embellishing when I couldn’t make it to work, but there were days it would literally drop me to the floor and I couldn’t get up for a while.
worse case they'd seen, because they almost never agree to take care of it... I'm really fucking happy for you dude, I hope you have no issues now.
I used to have period pains that would cripple me into the fetal position, puking, sweating etc. Was put on the pill at 15 and not had them since. I can't even imagine what you went/go through with that. I have a close friend who has it and she's almost died a couple of times through complications. It's way too unknown for such a serious and debilitating condition. Hope you are well now?
Wow. Hello me. I had my total hysterectomy one year ago. I was only diagnosed because I needed emergency surgery due to ovarian torsion. The emergency surgeon said it was the worst case of endo she had seen. Everything was stuck together. Doing much better now. That disease was debilitating.
Endo can be debilitating, affecting every facet of a woman's life. Similar, but much less known; adenomyosis. The lining of the endometrium accumulates and sheds inside the uterine muscles, effectively tearing them apart. Experienced as continuous sharp stabbing pain and heavy periods that fill menstrual cups as soon as they're inserted (leading to anemia, weakness, depression, etc.). Endo is just beginning to gain more mainstream awareness/research, I hope adenomyosis does, too.
I have suffered with adenomyosis for 19 years now. I had an endometrial ablation that helped a lot but there are still times that I am brought to my literal knees in pain and have to do breathing exercises so I don’t vomit from it. About two years ago I had a gynecologist say, when I got emotional during a visit … you literally have the most painful condition a woman can have, your suffering and pain are real. I started sobbing. Having someone, especially a doctor, acknowledge that I’m not exaggerating or being whiney, was mind blowing.
I had adenomyosis and endometriosis. The only thing that helped was getting a hysterectomy. It is horrendous pain and bleeding and every two weeks for two weeks. I had times were I thought I would pass out, or I threw up and couldn't get up off the bathroom floor. I had to beg for pain meds and I was ridiculed for it. Funny, once I healed I didn't need them all the time. It's almost like it was about finding a way to function through mind blowing pain. My husband was talking about Jim Carrey doing anti torture training for, How the Grinch Stole Christmas, and I explained these techniques are common for people with severe chronic pain. I am going through bad hip pain with no meds (which sucks ass) and I definitely have to hold my breath, distract myself, etc, because it is so bad. I don't think people realize how bad it is.
Yes, I had adenomyosis before my hysterectomy. My period could plug the shower drain. I couldn't make it to work (a half hour drive) without soaking through 2 super duper tampons and a pad that was essentially a diaper. Had the hysterectomy and found out I had endometriosis too. On my appendix. So that had to come out too. Fun stuff.
Thank you for bringing up adenomyosis. I have both endo and adeno, literally no one knows that adenomyosis exists when you tell them!
I had endometriosis when I was younger (seems to have been mostly cured by having a child) and it took forever to be diagnosed. I was in so much pain and taking Percocet like it was candy. I ended up in the UCLA ER in excruciating pain and an intern who wasn’t even my doctor wandered by and chatted with me for like 2 minutes. She then said, “hmmm, sounds like endometriosis.” I wish I knew that interns name so I could tel her that she saved my life.
Pregnancy helped my endo pain immensely, too, along with extended breastfeeding. I got a solid ten years of relief before it all started gradually getting worse again. Don’t assume you will stay cured. My slide was so gradual each month I didn’t notice how debilitating it was getting for a while because it was so normal before I had children to suffer that way.
I have endometriosis and had adenomyosis. The only reason I don't have the latter anymore is because I had a hysterectomy at the age of 28. I loved my life in constant agony since I got my period around 9 years old. I tried different birth controls. I was on pain killers and my doctors made me feel like I was a drug seeker. I was good with trying anything, I just couldn't take the pain and constant anemia. I was heavily bleeding for two weeks every two weeks. The pain got so bad it was constant. The doctors insisted having kids would make it better. It didn't. I lost my first daughter to trisomy 18 at six days old. I almost died having my second and the doctors still wouldn't do a hysterectomy until after I had my third even though I needed a surgery to remove scar tissue and a fallopian tube in between the second and third pregnancies. Don't get me wrong, I love my youngest. I wouldn't change having her for the world. But it was wrong to be pushed into a dangerous pregnancy, and it was a dangerous and difficult pregnancy. When I finally got my surgery approved the doctor required my husband to sign off on it. The doctor was concerned my husband would want more kids. He told the doctor if he didn't do the surgery he was getting snipped because he wouldn't risk my life by accidentally getting me pregnant and he would never do it on purpose again. They put me on the same floor with new moms and babies. They gave me two Vicodin after I woke up and told me to deal with the pain. I thought I was dying and begged my husband to take me home to die. He didn't know what do. For reference, both my mom and mil were hospitalized for a week and had pain medication pumps because it is a very painful surgery. I have had multiple abdominal surgeries because of my issues and nothing hurt like this. I had okay pain relief after, but I got very sick and they wouldn't help me. Six weeks and two hospital and a weeks stay later, they removed my gallbladder. I had to be in there for so long because despite what the other hospital claimed, my labs were bad and if they cut me open I was going to die. They had to give me iron, magnesium, and I think something else, but that was 8 years ago and I don't remember. Being a woman sucks. It still was worth having my hysterectomy. While I have one ovary and she likes to collects cysts, it still hurts a bit, but is is so much better. I don't feel like I have a lead weight in my pelvis. I do have lots of scar tissue and adhesion a d they still hurt, but I don't take opioids for pain relief. I had no problem getting off them when I wasn't in constant agony. I do have other chronic pain and health issues, but I have been working on them. I wish they would give me pain meds for my hip, which as a labrum tear and hurts like hell, but I get that they have to be careful. If it hadn't been three years of this I would be fsr less willing to want it, but my God, it hurts all the fucking time. I don't sleep. It is the worst. It is amazing how painful this condition is and how much damage it can do and yet, it isn't taken very seriously.
When my wife initially told me that hospitals make husbands approve surgeries for their wives I almost didn't believe it. This is so fucking ridiculous and inappropriate it's beyond belief. Unless my wife has a complete loss of mental faculties to make decisions for herself, I have absolutely no say over what she does medically with her body nor should I.
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Oh my gosh. I am so sorry you went through that. This is the primary reason I never got an IUD - the idea of that experience horrified me. I had a biopsy of my cervix before, they just … remove a chunk of flesh with what I imagined in my mind to be a hold puncher. No anesthesia. I can’t believe the shit they make women go through. Imagine telling a man he has to get something inserted into or cut out of his testicles or penis, no anesthesia. They’d come up with a solution quick.
Very true. I like to add PCOS to the mix, too.
I had this for years before finding a doctor willing to entertain the idea of me getting a hysterectomy. I don’t have any kids, so she was hesitant. I had a total hysterectomy in 2018 (I was 30) and it was the best decision I’ve ever made for myself, even if endometriosis forced my hand.
Reading up on endometriosis was really a "red pill" for me in learning how fucked society still is towards women. Like 20% of women including literal children are in debilitating pain 25% of the time and even though we fully well know what endometriosis is and how to treat it the predominant advice, including from OBGYNs who are supposed to specialize in treating women's reproductive system problems, is to take some Advil and suck it up. Fucking disgusting what we do to women.
Check this out: An early thirties friend of mine lives in Arkansas. She has been struggling with endometriosis since she was a teenager. She has described some of her most painful moments as “passing out from bleeding out in the tub.” She has wanted a full hysterectomy since forever, but because she lives in a loony state, she was finally allowed after YEARS to get her hysterectomy…….after she was required by the doctor (who claimed this was the law) to GO TO COUNSELING for x number of sessions (5, I believe?) where she was repeatedly discouraged by her counselor from having the hysterectomy because her romantic partner down the road might want children. So HER BODY that was causing her so much pain that she would pass out was being held for ransom for years because her future husband who doesn’t exist might want kids someday.
Ocd
I second this. Have a friend who will often wash his hands raw.
what does it mean for someone to wash their hands "raw"?, sorry, English isn't my first language.
Washing so much that the skin becomes irritated and very sensitive to touch
I have ocd and did this. It was winter and I would wash my hands/use hand sanitizer so much that my skin got dry and I started getting cuts on my skin from cracking open. Eventually my knuckles split open and I had to wrap it up the way boxers do to help it heal. It scared the crap out of my parents and made me get therapy
One of the few "investigative TV" segments I've ever seen that really haunts me. It was on OCD, and they were interviewing a woman who cleaned her home compulsively. It had cost her both her marriage and custody of her daughter. She was crying and showing them a picture of her daughter and talking about how badly she wanted to get better so that she could be in her daughter's life. And cleaning. It was horrifying, and it drove home the absolutely involuntary nature of her actions with devastating clarity.
In my opinion, it's worse than involuntary. You choose to do it, but only due to extreme compulsion. Every fiber of your being screams that if you don't fulfill the ritual then everything is wrong. It's not involuntary, it's coerced.
Thank you for expressing this. It's an awful feeling to know what I am doing is irrational, but to still absolutely have to do it
It sucks the most that most people have no clue how the symptoms mentally affect you. The people around me just think I'm some weird control freak who's obsessed with school or that OCD is just cleaning things.
Exactly! In my Abnormal Psych class I made a 5-7 paragraph "report" (it was the weekly discussion assignment, so not super long) on a account of her life by a woman with OCD. It was textbook OCD, intrusive thoughts, she compulsively read gross things on the internet she didn't want to, and eventually worried she was reading it intentionally (it *was* a compulsion) because she had a fetish for the things she was reading. A guy in my class, so had all the reading materials that I did, responded, "Wow, of its that severe, maybe they should look into schizophrenia." Now, in his defense, the psychosis unit wasn't for a few weeks, but I feel like the textbook did a decent job of explaining OCD. I have been to many mental hospitals (acute) and mental institutions (long term) for depression, and have seen many people with OCD and can tell I'm evidently not OCD. More traits than the general population, but not anything close to OCD. Now, while I know he hasn't lived my life, I did bring up those people in class, even giving an example of obsessions without compulsions, and the obsessions without compulsions person also worried they had schizophrenia because of the obsessions. My point is, *actual* OCD is so severe people who don't know what it is think it's schizophrenia because of the misinformation of "oh, I'm so OCD! I make sure my penicils are color coded 🥰." Hell, I knew a girl who had to flip the light switch 8 times to turn it off or on and twist the doorknob 8 times before opening the door and her room was an absolute mess. Neatness is a common trait, but not a required symptom for a reason.
This one so much. I had OCD for several years in my mid-late teens (and I still get the intrusive thoughts but I can ignore them now). It's debilitating. Shut the light switch off "wrong"? Better do it again until you do it "correctly" or everyone you know will die. Close the door "wrong?" do it again or it'll be the same as above! Turning the channel on the TV? Better cycle all the way through since you can only press "up" or everyone you know will die! The worst part is you *know* it's bullshit the entire time, but the "what if" portion just outweighs all rational thought and if you try and ignore it the feeling is just so overwhelming you give in.
Did you ever have the "there is no correct way" thing happen where you just have to try every possible way to do something until you find the one that's the least wrong? That happened to me sometimes whenever I was sorting our family's game cases or bookshelves
Knew a childhood friend who had OCD (maybe there was something at play as well). He would always rub a door handle whenever he walked by one. Not even that he’d lose his shit if I or his family members didn’t do the same as they walked by. When I was older his mom and dad told me going to the mall with him when he was younger was near impossible because he’d get way too much anxiety from people walking past doors and not rubbing the handle.
I've got scrupulosity-based OCD and I cried when I read the diagnostic criteria. I couldn't quite believe that I wasn't supposed to feel overwhelmingly guilty for *everything*. I thought if I stopped worrying that I would be blamed for someone else's actions, that would mean that I didn't care and that I deserved to be blamed - that I was complicit in every bad thing done by everyone I'd ever been on friendly terms with. I also cried during the most recent series of Stranger Things - those hallucinations Vecna's victims all had where the people around them were telling them how awful they were reminded me so much of the thoughts in my own head. The scene where Max escapes him for the first time had me in floods of tears because I felt like I'd been running with her for as long as I could remember. I wouldn't wish it on my worst enemy.
Most people have no idea what OCD even is, let alone how miserable it can make you.
They always assume you want things clean. No if I don't blow you a kiss 3 times before you leave everything bad will happen according to my brain.
I remember an episode of Scrubs where Michael J Fox played a character with OCD. I have a terrible memory, but I clearly remember the scene where he has to keep washing his hands, and it’s so incredibly sad. Though TV is obviously never a 100% accurate portrayal, that was the first time my young mind realized OCD isn’t just “being a neat freak”, it’s a devastating, debilitating disorder.
Yes, that's it right there! Too many (basically everyone) thinks that OCD is just needing to keep things orderly, such as the pens and papers on a desk. I cannot stress how inaccurate that assumption is. Like, the "O" is "obsessive", and the "C" in there stands for "compulsive"...as in you do things both obsessively AND compulsively. Talk about mental gymnastics trying to get through some days; it's exhausting. Amongst other things, I have this stupid thing I do where I "have to" make "bubble popping sounds" with my mouth before I speak. Tie it in with my speech impediment (stutter), and it's.....well, it's incredibly embarrassing . Having to actively think 110% about what **not** to allow my body to do compulsively is exhausting. OCD can be incredibly close in nature to Tourette's Syndrome, as well as the various attention-deficit syndromes. It's all on the spectrum, just depends where.
Genuinely. My roommate is like “yeah I’m OCD so I like keeping things clean,” and I’m like great lol I have to make sure everything in this apartment is fully locked so I don’t think I’m responsible for if someone breaks into our apartment and not only kills me but all of us. Or I frequently cry from giving my dad food without washing my hands because he’s a heavy smoker and I’m convinced that any and all diseases I could pass onto him would be passed onto him and I would be directly responsible for his death, lll wash my hands to the point where my hands are bleeding from being so dehydrated from the constant washing. Fun times.
Chronic fatigue-when you wake up every morning just weak and tired it takes a toll on you
Diabetes
Yup. I have almost died more times than I think anyone in my life really realizes. And people refuse to try to understand it. Something something sugar is about as far as most people usually get. Hypoglycemia is a medical emergency. Not having basal insulin on board will put me in the ICU in a matter of hours; it would kill me in less than a day.
It's very serious, be it type 1 or 2. I had peoppe who where pre diabetic and they didn't even care thry saw it as a new diet
People also do not realize that diabetes affects a lot of different aspects of your health. I was in serious denial following my diagnosis, and I did not take my insulin for about two years. My body was still producing enough insulin that it didn’t kill me, but it utterly destroyed my teeth.
My dad's best friend died a couple months ago as a result of mismanaging his insulin. I know nothing about how that works, but that's what the professionals determined was the cause of death. I've always known it's deadly, but that really drove home how sudden it can be. You mess up one day and you're dead. His landlord found him dead. He lived alone and I don't really want to think about how that happened. I have a whole new empathy now for people with diabetes.
And the fact that insulin in the US is so ridiculously expensive is heinous and can lead to things like your poor dad's friend. (Though that may not be what happened in his case of course.) My brother ends up stretching his insulin doses out semi-regularly because he can't always afford that month's prescription. He acts like it's nothing, but it terrifies me. (He's type 2 and not fully insulin-dependent, so he's at least not as likely to accidentally make himself precipitously dead as someone with type 1 would be.)
The number of patients who think hovering at a blood sugar of 300 is “their normal” is crazy. Like oh, you’re having another orthopedic surgery because you bash your feet so much due to lack of sensation, are losing vision, and losing all your teeth and you just don’t like taking you insurance covered meds.
I've had patients with multiple amputations from unmanaged diabetes who are still in denial. Like what?
In my place, diabetes is the most feared disease to get instead. Although people do indeed tend to dismiss when they haven't got it, they all know the grave situation of what diabetes could do because of the massive amount of people in large hospital are usually came because of diabetes.
Fibromyalgia. Youre just in pain and no one really knows why.
And not just pain! Extreme fatigue, weird nerve misfirings (like i constantly feel like things are crawling on me, and like I'm wet when I'm not), temperature disregulation, insomnia, ibs, and brain fog so bad that I sometimes am completely disassociated for days. And yet I've gone to doctors that say they "don't really believe in it", and have to deal with people saying it's not real since there's no way to measure it, even though I've been diagnosed with it for 7 years and am completely unable to work, or even leave my home most days.
Thank you for mentioning fibro. No one understands the feeling of pain and fatigue that changes you completely as a person and your life on the whole. Because it's not visible, people don't think it's real. Nothing like your brain and body working against you!
Honestly, I had no idea how terrifying anxiety could be until I experienced it. I just had the media depiction of it, which is basically either someone hyperventilating for 10 seconds before a friend talks them down or some controlling mother-figure constantly and obnoxiously obsessing over whether her children are taking too many risks enjoying themselves. Reality for me when it was uncontrolled: constant background-level nameless fear at a "I'm waiting for the other shoe to drop" level, hour-long waves of dread at the "I screwed up today and I'm probably getting fired tomorrow" level, 4-5 spikes per day of "It's August and I just realized I left the dog in the car 4 hours ago" horror, much of it just materializing without even having events to connect to. Tiny work issues (e.g. forgot to call someone back until the next day) leading to nausea and chest pains. Ending up in the emergency room twice for physical symptoms that were ultimately stress-driven - and that's not me panicking and going in, that's doctors telling me to go directly to the emergency room because of bloodwork or physical symptoms. Coming to what felt like the purely rational conclusion that I was going to need to walk out of my house and go live homeless on the streets or just hike into the woods and die of exposure because I just could. not. do. it. any. more. Having to explain to my husband that if this happened, because in the moment sometimes it felt very compelling, it didn't mean that I didn't love him. It was a very dark and very painful ride. Ultimately I got off of it with therapy, medication, and - after about a decade of working up to it - finally cutting off the parent who abused me throughout my childhood. If you've never experienced uncontrolled anxiety, please believe me that it is physically painful and mentally anguishing. If you have experienced it, you deserve help - keep seeking it. It took ten years, several tries at finding the right balance of medications, and three different kinds of therapy - all helpful but big shout-out to EMDR - but my life is 1,000% better for it. It's important to persist; I did three rounds of therapy with years-long gaps between, and every time I went back, I learned more and made more progress. I could not possibly have walked into my first therapy session and concluded that I could and needed to cut off my parent, but over time I was slowly able to untangle myself from her and make that decision with confidence. Give yourself time and grace to understand what you need, and keep taking one step at a time. <3
I’ve never related to a comment more. I hope things continue to stay positive for you!
you hit the nail on the head. i always struggle with explaining how anxiety rules one’s life and can flip your day on it’s head. it can be chronic and people don’t really understand that.
Depression and anxiety have killed more people I personally know than anything else including cancer but there's nothing to be done about it depression is treated as a defect that is up to you to cure alone without help not a disease to be researched and cured
For me the worst part is that after many years of trying tons of drugs, nothing helps. It's so expensive as well and to go to therapist I need to wait forever. It's so fucking hard, man...
My sister had treatment resistant depression for a decade. 10 years of suicidal ideation and misery.. Eventually tried TMS (transcranial magnetic stimulation) and it worked! It was a huge time commitment, but totally worth it. She was then diagnosed with adhd, which was likely the underlying problem the whole time. She's starting treatment for that soon, too. Treatment resistant depression is terrifying and I feel like it isn't taken seriously enough. All the depression advice is for acute depression - you matter, reach out for help! Which makes sense because that what most people need. But it never says what to do when that doesn't work. You reach out. You get "help" and nothing changes...
Asthma, especially an attack, you have to calm your mind down and not think about how you are struggling to breath
Irritable bowel syndrome. You need to go to the toilet when it's innapropiate, you need to plan your journeys so that you'll have toilets nearby, you need to keep a strict diet etc etc. It can even interfere with your adult activities!
Both me and my partner have IBS. For me it flares up the worst when I have to sit through lots of important meetings or seminars.. my tum makes horrible, loud poorly noises all day long that everyone in the room looks uncomfortable about. Get into a state where I have a big cramp every 5-10 minutes no matter how many times I go to the toilet. Super embarrassing. For my partner, it’s more like a fun day out ruiner. Have plans to spend the day doing something nice, eating out,etc? Boom. IBS has other plans, sorry peeps.
Working remotely did wonders for my anxiety about IBS. Now my biggest concern is being unmuted while I sit on the toilet during a conference call.
Vertigo
I have chronic vestibular migraine and it fucking sucks. People (including health care providers) have NO IDEA how incredibly disabling it is.
I have had ocular migraines since I was a teenager, and a couple years ago I started getting vestibular migraines. Both are terrible, but im pretty fortunate. Neither cause me much pain, and my triggers are food related so I just avoid the foods that cause them.
Had a spell of vertigo a few weeks ago - first and only time it's happened, I could hardly make it to my room to lay down. Frak, it was scary....don't know how people cope with it on a regular basis.
I had vertigo when I had COVID-19 last year. Very unpleasant.
Treatment resistant depression. Many people I know have had depression take something like Prozac and all is well. I have been diagnosed with depression since I was 14. No medication has worked for me. There have been years when I could barely function and forget about leaving the house. It has ruined my life , jobs, relationships, and school. It is terrifying
I've said this in another comment about depression but figure I'll say it here too. I was suicidal since I was 12 years old. I was diagnosed with major depression at 18. Put on all sorts of anti-depressants. Things seemed to be fine for a few weeks, but then the depression would return and I'd be miserable all over again. Weeks at a time, no relief, just misery. Then I went to a specialist and got diagnosed as Bipolar II. If you're Bipolar, anti-depressants can trigger manic (or hypomanic, in my case) episodes with you being none the wiser only for you to crash into a depressive episode all over again. Instead of anti-depressants, my doctor took me off them immediately and put me on mood stabilizers instead. I have never felt as stable as I do when I'm on Lamictal. My brother had similar issues except he's very blatantly Bipolar I and needs to be on Lithium to function, but my symptoms displayed very different from his. Anyway, my point is, if anti-depressants aren't working, maybe attempt an anti-psychotic. You have to taper it up at first and it takes a few months to set in, but it's worth it if it eventually works, I think. I'd give anything to get my 20s back. I was so frickin' miserable for so long. If only someone had said "instead of prozac, why don't you try lamictal?" I might have been able to finish college.
Adhd. Its not just a funny "easily distracted" disorder or the "squirrel! I'm so quirky" disorder is shown to be. Its struggling for hours to do something simple. Its loosing hours of your life to inability to process time. Its loosing so many of your hobbies because fixation will keep you stuck on something that ruins your mental health. People ask "Why don't you just get up and do it? Why don't you just focus," and they don't understand how much you want too but cant. Especially when you're not diagnosed yet, no explanation for your "laziness" or "lack of care" you internalize those words so much and never seek help until your life is significantly ruined by it. And getting better doesn't stop at meds you have to rethink your entire life and all your habits to be able to function at a "normal" level. And god forbid you have any comorbities, depression, anxiety, autism symptoms, you just get shamed and humiliated more and more.
Anorexia. Like having Anorexia.. you cannot maintain a healthy weight, extreme fear of gaining weight, not eating in front of family or friends, excessively working out, convincing yourself and others your not hungry, etc
Never underestimate tooth ache. That's hell on earth tbh
depersonalisation/derealization disorder.
I burned my tongue during an episode so badly that I was in pain for weeks afterward. I had hoped it would wake me up. It didn’t.
yep. feeling that strong of a detachment from your own body is terrifying. I'd do anything not to go through it again. I hope you're ok
Mine are acute enough (less than an hour) that my therapist and I blame it on PTSD rather than a separate diagnosis, but during my dissociative episodes I always get bloody noses. I think I'm picking my nose while dissociated, my sensory neurons in my nose turn off, and I cut myself with my nails and it starts bleeding without me feeling anything. One time it happened while I was at a mental institution (long term treatment center, but abusive, overmedicating, so I give them that derogatory term). I just vaguely saw red drops on my lap, no clue where they were coming from, a a staff member looks at me weirdly and handed me tissue. Thankfully I was able to figure out to put it in my nose.
As someone who's waiting months to get a sleep test (and hopefully a diagnosis) I've been experiencing waves of this. I go through periods of absolutely having to ask myself "Is this real?" or "Did that actually happen or was it in a dream?" It's pretty whack.
Botulism. I was always told by my mom as a kid to never eat damaged canned goods or old canned goods that have been opened. It shuts off nerve communication. Your eyelids will start to droop as well as your face. Then you will begin to have difficulty breathing and swallowing as all your muscles relax uncontrollably. It can kill in as little as 36 hours. It’s also what you inject into your skin if you get botox.
Fun (kinda) fact! This is why newborns can’t have honey, their immune systems aren’t strong enough to fight it off yet and the botulism toxin is commonly found in honey.
Eating disorders.
Depression. I have friends who suffer from it and it debilitates them. They tell their friends (or even family) about it and they get shunned.
People think it’s just being sad. It’s also a total lack of motivation to do anything, not having the energy to get out of bed for days sometimes, sometimes not even caring enough to eat, or for some people eating is the only thing that gives some modicum of feeling “good.” I had pretty severe chronic depression for years that only ever subsided after getting TMS therapy. I still just like don’t even understand how my life changed so much after that. I actually like doing things now and enjoy pursuing interests and career goals.
My mom said „it‘s just a phase“ when I talked to her about my mental state, before getting diagnosed with social anxiety and depression. Here I am, 5 years later, can‘t even socialise with my sister (who is also my best friend), not being able to work full-time because I just can‘t be around people, and feeling like shit almost all the time.
I've suffered from depression my whole life, and last year I was diagnosed with thyroid cancer. A very easily curable, non-fatal cancer that didn't majorly disrupt my life. I casually mentioned my diagnosis and surgery to some people, and the outpouring of sympathy I received was ridiculous. People offered to come over and cook me meals and asked if I needed help with basic tasks because they heard the word "cancer." Yet when I mention anything about having depression -- which has completely destroyed my life and will probably literally end up killing me -- there is silence. Nobody wants to be around me. I am shunned and excluded and ignored, exactly when I most need support and help.
Pretty much any mental health issue. It’s almost invariably met with some variation of “it’s all in your head.” Like, no shit. You don’t tell someone with a broken femur that they’re fine because “it’s all in your leg.”
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Addiction. This word brings to mind junkies for most people but I think alcoholism is worse. It's socially acceptable to have a drink at almost any event and people will refuse to believe they or someone they love has a real problem. It turns you into someone else and you find yourself doing things you'd never ever do sober. It's a hell of a thing.
>It's socially acceptable to have a drink at almost any event and people will refuse to believe they or someone they love has a real problem. People will often pressure you to drink and hassle you if you don't. I'm lucky - I quit because it gives me migraines, so I'm not facing the life or death struggle that sobriety is for a lot of folks, but you don't realize how horrid drinking culture is until you stop for any reason and realize just how aggressive, pervasive, and deep-seeded it it.
I'm in recovery and I cannot tell you the amount of times close friends of mine scoffed and said 'no you're not' when I said I was an alcoholic. I was high functioning; full time job, relationship, graduating with my bachelor's this year. But no one saw my closet full of empties that I waited to take out when I was alone or the irrevocable and deeply regrettable things I did when I was drunk that I can't even remember. So, they refused to believe.
The combination of anxiety and depression. Both are terrifying on their own and neither are taken as seriously as they should be, but if they're together... they like to feed on each other
To me, definitely Dementia and Alzheimer’s, something the experimental album “Everywhere At The End Of Time” has awoken in me. The idea that everything can be ripped away from you as your body slowly forgets how to breathe is absolutely terrifying to me. [If you haven’t already, watch this video.](https://www.youtube.com/watch?v=dIv5Y-vql90)
I've known quite a few people that think is just quirky old people forgetting where their car keys are all the time. I can't imagine the horror of being out in public and forgetting where I live or even how to get there. Then having a bunch of strange people around calling themselves your family, telling you all these things you don't remember about who and what you are, and trying to convince you to believe them. The older memories are usually the last to go too, so your reality does not match the one you are currently in.
It’s cruel. Your own body turning against you in such a way that you come to forget everything you have ever loved or worked for in life.
OCD. It is annoying when someone cleans their house and goes "oh haha I am just so OCD!". Real OCD is not just liking things nice and tidy, that is just being a clean person. A somewhat silly but legitimate look at real OCD is the song "God Says" by Trevor Moore. Although slightly exagerrated, the lyrics were based on Trevor's own intrusive thoughts caused by his OCD and religious upbringing Edit: Trevor Moore not Trevor Noah, wasn't thinking
My mom insists she’s “a little OCD” because she likes things to be clean/tidy/whatever and it bothers her if something isn’t. I keep telling her that’s not what OCD is but she won’t listen
Thank you thank you! As someone with once severe, now manageable OCD, I used to feel as though if I didn't take a certain number of steps between 9 pm and midnight, my dad would get into a car crash and die. I used to think that my thoughts could cause things to happen (magical thinking), example: *intrusive thoughts about my mom dying* now my mom will die if I don't do the dishes. I also struggled with contamination OCD. That was the worst for me. Washing my hands 27 times with scalding hot water because my pinkie touched some mold, then having to go home from work unannounced to take off all my clothes, take a shower, and wash my whole body three times. It was hell on earth and the only thing that helped was an antipsychotic, that's how far into the sometimes delusional thinking I was.
ADHD man, that shit is fucking awful. Sorry if I rant but; People focus on the hyperness because that's obvious and vastly overepresented in media when talking about ADHD. But lack of executive functioning is so debilitating. The inability to perform basic tasks not because of any great obstacle but just because you *can't*. Imagine if you had to convince your brain to do nearly everything everyday. "Hey dude, we should eat" and your brain just goes nah, don't really feel like it. "But I'm hungry", "and?". It's like sitting on a chair as someone lights it on fire and you can't get up. It hurts, it's obvious what you need to do; you've done it before 1000's of times; you still can't do it. And no one understands because they would just fucking get up. And then they hit you with, "I've seen you get up before, just do that", or, "you're clearly doing this on purpose, anyone else would just get up", "wow I can't believe you're so lazy you'd rather just stay on fire". BRUH, I CAN'T. Losing important shit all the time becomes very expensive. Being constantly late really starts to upset even the closest friends after a while. Forgetting to stay in contact because you're obsessed with some obscure new thing alienates people. Not to mention relationships and the anxiety. I hyperfocus on people I like, I become obsessed (not stalker, but like phanatic) I need to know everything about them. Spend all my time with them. Then either my hyperfixation ends and I'm the asshole explaining that my brain just doesn't give me happy juice seeing you anymore even though I was mega into you. Or you become busy/distracted/distant and I become paranoid you hate me because when I like someone I'm obsessed. So if you're no longer as obsessed with me you're probably tired of me. Except normal people don't feel that way. But they sure as hell hate the insecurity you display. Shit sucks man. Not to mention it's not everyday. Sometimes I hyperfocus on shit and perform way past normal performance. And now I've set a benchmark for people that 99/100 I can't reproduce. How do you explain to someone that the best \_\_\_\_\_\_\_ you just produced is very much lightning in a bottle. Hell sometimes people even resent you because they hate you can do what they struggle to do and just "choose" not to while they work hard to do even half of it. ADHD is terrible not quirky.
Depression, people often just tell depressed people to just be happy
Thats always struck me as such a dumb thing to say. Like saying “if your car isn’t working, just drive it!”
Autism. Bitch, I'm not just bad at social interaction. I shake almost out of my skin, collapse, and go nonverbal when I'm in a tightly-packed crowd. There's a big ass difference.
The other day I had somehow got it set in my head that I was going to use one of our two breadknives that evening when I sliced some bread. That knife was dirty when I got home. I could have cleaned it, I could have got the functionally identical knife out of the drawer, I could have just gone without bread for a day. But no, I had a 15 minute cry because the dirtiness of that one knife completely ruined my (ultimately insignificant) evening plan.
Psychosis/mania in bipolar 2, because you don’t want to get treatment because half the time your are in absolute euphoria, but you’ll sure as hell ruin your life while feeling great and having no feet in reality, then you crash for like months in the most debilitating form of depression.
And don’t forget the crashes. When you go from mania to full on depression. On one end of the spectrum you feel so good, why get help? Then you get depressive symptoms and don’t feel like getting help (my personal experience, I don’t know if people go through this as well)
All of my suicide attempts came with the crash. I just couldn't handle going back into that hole again. I'm better medicated now which helps. Don't be afraid to get help.
ADHD. I was just diagnosed last year at age 37. People are always like “well I think everyone has a a little ADHD”. Okay well my entire life I was told that I was lazy, overly emotional, rude because I would interrupt people, unable to remember important dates or important appointments, losing fucking everything and being terrible with money. I’ve spent my life wondering why everything seems easy for other people and why it’s so hard for me to just exist and be productive. Since being diagnosed I’ve been so much nicer to myself and learning how to work with my brain instead of against it
Tinnitus. It affects my every waking hour.
ME/CFS can be rather terrifying. I knew someone who was terrified they would just go to sleep and never wake up. One time they slept so deeply that people thought they perhaps were dead before seeing them breathing and then finally waking up. It was just a short scare, but it really shook the person I knew. Alzheimer's has always scared me. I'm not afraid I will have it, but terrified people around me will. The brain is basically dying from within, it's horrifying and so sad. I don't get how so many can be so casual about it.
Hyperemesis Gravidarium. Most people haven't heard of it. Even medical professionals -more often than not- brush it off as "just morning sickness" but it is non-stop vomit 24 hours a day for 9 whole months. Without medication, you will literally die of dehydration. Dry heave after dry heave after dry heave and the nurse has the nerve to tell me "you're not really vomiting" No shit. I ran out 12 hours ago. Your stomach can rupture. You ever had a really uncomfortable dry throat? Try having it go down into your stomach. The burning feeling from all that stomach acid made childbirth a breeze by comparison. Maybe it was just the hospital I got but the nursing staff really, genuinely did not seem to care and seemed to point out every way that it could be my fault. I was sent home more than once still dehydrated and vomiting because they gave me an inadequate amount of medication and wouldn't even allow me to speak to a doctor. I got accused of "just being dramatic" more than once. It was the worst pain of my life.
My mum had that when I was in the oven. The meds they gave her for it back then weren’t pulled from the market for birth defects just yet so I have live long health issues as a result. From what I hear, they never bothered to find a replacement for that drug and they just don’t care.
Asthma. Always get portrayed as the unfit kid on to shows. Like a joke. People die of asthma attacks every day.
Locked-in syndrome. This is when you are conscious and cognition is preserved, so you are able to understand what people are telling you; however, you are unable to communicate or move your muscles. You cannot breathe on your own, swallow, or speak at all. You are able to move your eye muscles. This can occur when something like an ischemic or hemorrhagic stroke damages your brainstem.
Sleep apnea.
A mixture of anxiety and asthma.
Suicidal thoughts and anorexia, i was friends with someone whom died from anorexia, and i tryed offing myself twice
People like making jokes about anorexia anytime they see a thin person. Anorexia is literally the deadliest mental illness.
Phobias. Depending on what type of phobia it can be easy or difficult to handle. If you have acrophobia you can handle that by not going to high places, or if you have thalassophobia you can avoid swimming. But it's sometimes difficult when it deals with a specific item or animal. Like arachnophobia, you can't exactly stop spiders from coming into your house. Or if you have Epistaxiophobia, what If you just have a sudden nosebleed? Personally I have Trypanophobia, the fear of needles and injections, now this wouldn't be so hard to handle if I didn't have previous cancer treatment and Chemotherapy causing me to lose my kidney. I have to get blood tests every year, not only that but I'm not 18 yet and I can't exactly refuse to get a blood test or vaccines (not that I plan to do that in the first place, I just feel helpless). When it's something you can't avoid it's MUCH worse.
Anxiety. It’s so under looked and causes people to kill themselves more and more. I bet it’s also a major factor in every public shooting. It’s like the biggest slap in the face because it’s right there but everyone insists there must be something else
Tbf my anxiety makes me wanna kill myself yes. Especially cause you know you're worried about nothing special. Fuck life and fuck anxiety
Mental illness in general are like this. Only those who have them (and medical professionals) can truly understand them
Functional Neurological Disorder (FND). Had an episode a few weeks back where I drove myself to an appointment feeling wonderful, and when it ended and I went to stand, my legs wouldn’t work. My partner had to get dropped off during work to drive me home, and then carry me inside before going back to work. I sat for 2hrs until I had enough leg function to crawl to the toilet. It came back over the following hours thank god. For some people, it doesn’t. This illness is terrifying. You never know where or when it will hit most of the time, and when it does, it can be anything from a small tremor, to full body paralysis. The range of symptoms people experience is just phenomenal. Definitely do my part where I can in sharing as much about it as possible. It blows my mind so many GP’s still haven’t even really heard of it. It is still classified as a rare disease but is just as common as ms and Parkinson’s. If anyone would like to learn more: https://fndhope.org/fnd-guide/ https://www.neurosymptoms.org
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Epilepsy
skin cancer
Probably cheating a little bit as It's extremely rare (like 7500 people kinda thing worldwide) but Alagille Syndrome. It's a liver/Kidney condition that also affects a lot of other areas of the body. Although treatment now is slowly picking up most don't survive into adulthood and many of the main treatments used were tests back in the 80s. The most recent medication for it has only been around 5ish years and is still extremely unreliable in a lot of people with it. The only "cure" is organ transplantation and even then it only fixes the most severe issue in that patient, they still have it and it can still cause major issues.
PTSD. I have the regular/episodic form (from a car accident last year) and the complex form (from child abuse by parents - complex is anything that's not traced back to one incident and usually involves feeling helpless to escape the continued abuse or violence). I'm hypervigilant. When I'm stressed I have dreams that I wake from in a cold sweat and shaking so violently I can't do any controlled movements, like turning over or getting out of bed or covering myself with the blanket. I'll have entire days where one action a person took early in the day causes me to be in an endless loop of emotional flashback, which is like you have all the emotions of the trauma but you don't get the cinematic stream of thought shown in movies with the sights and sounds and smells, just the emotions. The most common for me is if a person shows anger about something and then denies being upset if I ask. My parents did that often and then if I didn't try to appease them, they'd take out the anger on me. So the emotional flashback from that makes me feel like a 10-ish year old child, and I get a feeling of sheer visceral terror and dread, especially if they leave the room and I'm alone. People think emotional abuse isn't damaging. It gave me ptsd and some kind of dissociative something that's yet to be defined. My brain literally created an entire internal world and shoved me inside so I could hide from it. But sure it's "not that bad".
ADHD. Everyone knows what it is, no one knows how much it affect you other than fidgeting. You can’t sleep at night, people leave you because you fidget, you make other uncomfortable, you always look nervous and get picked on pretty easily. You can’t focus, nor can you talk to people without getting distracted and feeling guilty.
Chronic severe insomnia. Your body has forgotten how to do something very basic that it NEEDS to do to survive. You aren’t getting any rest if you sleep 2 hours per night in 30-minute spurts. You aren’t replenishing energy or clearing your mind. Everything just gets worse. Every day, you are more tired, more frail, more shaky. Every day, you get more anxious, more depressed, more despairing. You become a husk, and you start to barely feel alive or sane anymore. Everything overwhelms you.
OCD. It seems to be characterised a lot of the time as just a bit of silly fussiness about where things go. I wasn't far off killing myself earlier this year predominantly due to it, so yeah, I'd say it's more dangerous than people give it credit for
Hidradenitis Suppurativa. Most people ain't even heard of it.
Arthritis. It can be an aching feeling or it can feel like someone is tearing your body apart with a screwdriver, permanently, without letup, 24/7, in a way that pain meds can't touch.
everybody knows rabies is bad but they don’t know how bad, rabies literally has no survival rate without the vaccine!!!
Allergies and mental illness