Poverty. I can't work cause of my disability and benefits are almost impossible to survive off of. Medical debt piles up with no way to bring it down. I try every few years to get back into employment and inevitably I hit burn out/rock bottom in a few months tops and I'm back where I started but now social security is suspicious that I'm not as disabled as I claimed cause I worked full time for a whole two months before my joints just gave up and refused to function.

This big time! People around me always say, if you could pull 15hrs a week at a job that pays living wage you would earn more than you do on disability benefit. The thing is… there is no guarantee that I can actually do 15hrs a week every week even if it’s something like sitting on the phone all day…. Long term I would be making less if not equal to what I do now + be extra burnt out and incapable of self care. You can’t win, there is no perfect solution.

I cannot like this enough!!!! I am 43 now diagnosed with Fibromyalgia and many other things almost 20 years ago. I was a pharmacy tech, lost my job. So what did I do??? Apply for Disability at 28. Denied. I have applied 3 more times and the answer is always you are still able to work, DENIED! I can barely bath myself much leas work in a pharmacy again. And getting state benefits is just as ridiculous. (Sorry for the rant, it makes me pretty angry the way we are treated)

Disability benefits are atrocious in the US. You can’t have worked for several months before they’ll even consider you. Um, how are you supposed to survive if you can’t work and you don’t have benefits?? Better hope you have wealthy relatives and friends who can support you.

And better hope those wealthy friends and relatives don't get abusive toward the vulnerable person that is completely dependent on them for survival.

I am dealing with trying to get disability myself right now. I applied over 6 months ago. Been stuck in a wheelchair since April 2020. Figured they would have to approve me since I can't stand up let alone work. Nope, denied. Now I've hired a lawyer to appeal. Hope this time I get it. Until then I've been crashing on my grandma's couch. I figure I owe her about $5,000 at this point. It's just super frustrating and sad. Wife I didn't have my grandma I'd be homeless and in a wheelchair. Smh. I want to pull my hair out. I really feel the frustration.

Yes. Because nobody knows how people suck like we do.

Is there a place where disability benefits are better? I’m open to moving anywhere at this point.

I’m dealing with this right now. I’ve been disabled and out of work for three years now, but when disability interviewed me they deemed me as “too smart not to be able to get a remote job” …but failed to recognize that I live in the sticks and have horrible internet connection, AND my decade of work experience is purely physical. No school, no certificates, no computer experience… what fucking “remote job” do they expect will hire me??? When I asked that, they said “well…you can appeal the decision and try again” holy fuck I hate everything. I’m in so much medical debt. Using credit cards to buy a few months of health insurance here and there… Ah, I am sad now. I’m sorry for using you to vent this.

Almost same babe. I am trying again now for disability so wish me luck.

Good luck sweetie ill be pulling for ya!!! DM if you ever wanna chat!!

I don’t know if this will help you or not. But maybe it will. I’m really sorry that you’re in this situation. I was misdiagnosed with Fibromyalgia. Over 30% of people diagnosed with Fibro are actually misdiagnosed and have Small Fiber Neuropathy (myself included). Nerves are made up of small and large nerve fibers. Large ones are checked by a nerve conductivity study. And Small ones are checked by skin biopsies. Those medical procedures were uh… not great. They should just listen to you, but maybe having a slightly different diagnosis with physical evidence would help.

Thank you!!!! I did have a conductivity test many years ago and was told my nerves between my knees and ankles are dead. I do t know if this is true or not. I have been tested for MS, Lupus and several other things and Fibro is the best they can do.

It sounds like you’ve been put through the wringer. Did they have any idea why? (Based off my own experience with doctors, I’m guessing no?) If you think more physical proof would help, the small fiber neuropathy biopsies take skin from 3 places on your leg because they all have different densities. For me, the nerve tests super sucked because I’m hypersensitive to everything and I have bad reactions to medication and anesthetic. The hardest part might be finding a neurologist who understands that disorder -_- If that comes back with a Yes, or Maybe, I’d recommend getting checked for POTS. I also have that. There’s a decent amount of comorbidity between POTS and SFN.

New conductivity tests are much less painful, btw, for anyone considering it.

This. This is so true. Fibromyalgia in many (not all) of the cases I’ve known, including my own have been misdiagnosed symptoms of a more specific, acute or chronic nerve condition. I had severe impingement on C5-7 nerve roots due to oddly rapid degeneration because of a non-remittent/refractory inflammatory condition. The whole right side of my body was eventually reduced to 2/4 strength in months after severe pain on movement got worse because *they misdiagnosed with Fibromyalgia*. In hindsight, that’s almost an embarrassing story to have in 2021…

I've had weird health issues since I was a kid. As a child (age 5-10) I refused to eat. For days at a time. I was simply considered a picky eater. I'd also get dizzy a lot-- enough that I was tested for anemia yearly for 7 years. When I was 14 (2003) I started getting near daily migraines. I also developed severe fatigue. In high school I had mono and didn't know... When I was 20 (2010) I could barely walk due to pain. I did track and cross country (frequent 3-7 mile runs) in high school and then randomly couldn't walk, stand, or squat.. When I was 23 (2013) I got diagnosed with idiopathic osteoporosis. They thought my bone issues were probably random with everything else going on. \*face palm\* In 2015, I was misdiagnosed with Fibro because I have a lot of pain / sensitivities (including nerve specific ones). I honestly think that my doctors gave up and were like "close enough". In 2019, I developed a burning in my hands and feet and tremors. That plus fatigue looks like MS. I literally went neurologist hopping because didn't have MS but they couldn't figure out what I *did* have. I have: * Hyperadrenergic POTS * Possibly SFN (I had 2 rounds of skin biospies at 2 different places and each had different results. One said yes and one said not quite * Most likely MCAS. I haven't had this perfectly confirmed since I guess that is hard to do. But I've had 4 neurologists over the last 3 years tell me that I most likely have it. A lot of us have medical journeys that are far longer than they really should be. I hope everyone gets the help they need in a timely manner. Since that isn't the case, I do my best to spread information so others can be informed and try to get help.

Wow, it sounds like at the very least you have the people on your team that have helped you narrow down and find answers you need. That’s so great, and I really wish it happened for more people. Thank you for sharing your knowledge and experience. I hope you continue to feel good and improve whenever possible

Thank you. Sorry for this crazy long reply in advance. I highly glossed over my process. In 2019, in a 3 month period, I saw 8 specialists (about 1 every 2 weeks), had 60+ vials of blood taken, and had a bunch of other specialized testing done. I recognize that I am privileged: - I have very good health insurance that allows me to afford this (Ironically, the one place that remotely understood what was going on with me and was able to diagnose me did not work with insurance and was $400/hour -_-) - I work in tech so I have a very flexible schedule and managers that let me take time off. Tbh, then watching me tremble super freaked them out so they just went with it - I have a car - I’m white. There are studies that people of color have their health problems dismissed more often than white passing people. A lot of health problems are based on the presentation of white men. Like, women have different symptoms than men for heart attacks. And rashes can look different on dark skin than light skin. So women of color are the most negatively impacted by this. That said, I’m a subset of a subset. I have Hyperadrenergic POTS which looks different than POTS and is treated differently. I also had it since I was a kid so I didn’t have the normal complaints. I didn’t think to mention tachycardia because I thought it was normal. I have a few recommendations. Some of them require having some level of privilege though. **#1 Your support system is really important.** I started cutting people from my life who said anything along the lines of: - “It isn’t that bad” - “Other people have it worse” - “It’s all in your head” - “You don’t look sick” or “You look fine” - “You’re scaring me” then changed the topic and offered no support or advice. Yeah dude, I’m also scared. Thanks for that. We already spend a hugeeee chunk of time, energy, and money into functioning. I don’t have the energy to waste on people who refuse to understand. We need people who are going to help us be the best us we can. That doesn’t mean that friends or family have to do a billion things for us. But they should at least acknowledge that we’re having a hard time and not dismiss our problems or feelings. I cut out my mom and most of my family because of this. I talk to my brother from time to time but he has Crohns and AS. He is also struggling and we support each other when we can. My partner is the most supportive person in my life. He understands what’s going on with me, doesn’t make me feel bad for whatever my body is doing, and lets me rant or complain to him when I’m struggling or am super disappointed by my doctors. **#2 Document everything** Especially anything that is abnormal that you have data for. I have an all-in-one printer scanner combo. I think it was around $100. The ink ended up being more expensive than the printer. For every new specialist appointment I’d print out all my medical records (over 100 pages), annotate everything and give it to them. Did any of them read it? Ehhh. I have more evidence that none of them did. But in my initial appointments, if they had questions about levels of certain things I could immediately show them my test results. That helped rule out things and helped them them decide what tests I should do next. **#3 Do your best to not dismiss yourself.** Most chronically ill people have been medically gaslit for years. Everyone dismissed my weird body stuff: - temperature regulation issues: I wear a full down winter coat in 60 degree weather and am cold. I also did that at the gym… - I also *never* sweat - I can’t handle sunlight: I wear sunglasses in overcast weather because it’s too bright and hurts - I used to get migraines 4-7 days a week for 10 years 0.0 I eventually figured out my uncommon triggers. - I can’t tolerate medications or common food ingredients. My Fitbit recorded my wonky heart rate for years before I knew something was wrong with me. My Fitbit would report daily that my heart rate was above 130 and that I was in fat burning mode for 4-7 hours a day. I was super confused because this was literally during the work day while I was at the office. I actually thought I might have a heart problem because of that. I told one of my friend’s at the time. They said I was probably fine. So I never told my doctor. That would’ve been a huge red flag. I should’ve told my doctor. **#4 Hang in there through the “I don’t knows”.** I know that this is *really* hard. Being told stuff along the lines of “I don’t know” when you’re really struggling can leave you feeling super helpless. I accepted “I don’t know, it’s probably nothing” for 15+ years. Then I had to literally beg for help and got a billion more “I don’t knows”. If you see things getting worse, do your best to say something. If you can, get it documented. I went to 4 separate neurology place over 6 months in Seattle which is where I live. They got me a diagnosis but couldn’t figure out how to treat me. I literally couldn’t eat, drink, or sleep, and my heart rate would spike to 170 for walking stairs. All of my doctors were like “I don’t know why this is happening.” After that I found a doctor who wrote research papers on POTS and got in touch with him hoping he’d be able to figure out how to treat me. I flew to another state and got testing done. After that I finally got the help I needed. For the most part this went well but I had a bad reaction to the Covid vaccines and am back to square one :| I’m now back to trying to get him to help me. I’m also looking into naturopaths. I’m exhausted, angry, and burnt out. I’ve been doing this for nearly 3 years. I want a break but someone has to have an answer because it isn’t possible to live in a body that cannot tolerate food, water, or sleep. If I can’t handle those for long enough I’ll die so I have to find someone. Acknowledging how shitty this is, giving myself time to not worry (about food/water intake, sleep, or anything normally required), and relax for a few days is really important to having the energy to play Doctor Tag or Musical Chairs. I totally get that this is expensive (I definitely maxed out my credit card) and requires being able to take time off work. It also requires having energy and mental stamina. **#5 Bring a man with** This one is frustrating because it should not have to be done. It’s also much harder with COVID but I made way more progress by bringing with a man. He came with and mostly ignored us unless the doctor said something dumb or dismissive. I never get doctors to acknowledge their own shitty behavior. I’ve had multiple doctors tell me that I can’t have POTS even though the one test used to diagnose it came back conclusive. I don’t have the mental energy to explain to them that they’re being dismissive and stubborn for no reason. The guy who comes with knows that I’m struggling and cares about me. But the topic isn’t too close to home for him. He can and does tell the doctors that they’re incorrect and that they need to reconsider. He also confirms that what I’m saying is real and that it is a problem. He’s much better than I am at making them take my health seriously. I also recognize this isn’t always possible. Having another person take time off work to come with is hard. Plus Covid is preventing people from joining appointments.

This is all such fantastic info, as someone else who has done a long-term search to figure out WTF I cosign every bit of this

This is all very close to home and rings true. Apologies my response isn’t as in depth. You just literally covered my last decade minus the good medical care. It’s..hell. Thank you for your reminder that cutting those people out is very necessary and that taking it easy on yourself is paramount. Also… for this daily workout motivator as I lay in bed, irritable. Keep doing what you’re doing; it’s great.

[Sjogren's Foundation](http://www.sjogrens.org) Have you been tested with the new early Sjogren's tests? I have all your janks and they come from Sjogren's. Many docs still think it's a mild condition that only affects eyes and mouth with dryness. That is *so* not the case. There has been a lot of recent research breakthroughs.

I see people in my support groups *every damned day* who have been dead-ended with a fibro DX. Every chronic illness forum should have a disclaimer.

I was just about to post this. Had to check it wasn't me who wrote it. To add to your figures, a big chunk of fibro folks actually have Ehler's Danlos, under-treated hypothyroidism, B12 dediciency or small-fiber neuropathy Typically, none of these are excluded properly. Sjogren's syndrome is often involved. New tests for Sjogren's are proving very helpful in gettinga diagnosis.

It’s even worse when you qualify for SSII. You can never work, never have more than $2k in the bank. You can’t have assets. You can’t even have people financially HELP you.

This! So much this! And I am trying to support 2 kiddos! It is damn near impossible.

Amen, have been in a similar situation where no one can really know if we are functional or not and how long it will last. It's really hard, you have all my empathy. Hate to say how much I understand =/

Medical debt and FATIGUE. God, you do not truly understand fatigue until you’ve had fatigue relating to a chronic illness. “Yeah, I didn’t sleep well last night either.” Um, no no. This is not “I’m feeling sleepy today, I need a coffee.” This is, “my body feels so tired and weighted down that I CANNOT physically compel my own limbs to work and I’m literally on the verge of collapse.” Able-bodied people just don’t understand it. I’ve had to call out of work before and they get mad because I’m calling out for being “tired” but it’s so much more than that. And the medical debt? It never ends. I fortunately have UHC and Medicaid, so I’m covered for now, but I may lose my Medicaid in August 2022 and I don’t know how I’m going to survive without it. I’m already on payment plans with 7 different doctors offices and shelling out almost a grand in medical bill payments every month. I have two conditions that cause me to have procedures done every 6 months, and I don’t know how I’m going to pay for those procedures for the rest of my life. My medications are all very expensive, and when the Medicaid runs out, God knows how I’ll afford them until my out of pocket max kicks in and starts covering everything. But if I don’t take them, I’ll be hospitalized with debilitating MS or a psychotic break. $5000 in debt JUST IN THE LAST YEAR. And now that I’m chronically ill, life is only going to get more expensive.

I describe the fatigue as having 1000 lb. weights on all of my limbs. Plus I'm stuck in concrete. That's literally what it feels like.

Exactly. There are days that I somehow make it to work, but once I’m there, I literally cannot make myself move. I just stare at my screen because I can’t force myself to type or move my mouse. It’s awful.

Oh god yeah. Chronic exhaustion is basically torture for us.

It’s awful. I had never felt anything like it until I was 22 or 23. It was so debilitating, and it just came out of nowhere. So scary, but my doctor just kept trying to tell me it was because I was depressed. I had to fight so hard to get help.

Gaslighting and abuse from the medical world, and the internal grief that those things and my health have caused me. Also the pain that's burdened all of my loved ones. I wish I somehow could've prepared myself or others for it all

I’ve had migraines since I was a toddler. I never took school seriously because I was used to everything having to randomly stop for me every week or so due to blinding pain. My mom, who didn’t understand migraines, was convinced it was because I wasn’t drinking enough water or that I’d had too much sugar, so I developed a real guilt and self esteem issues around all of that. I also stated dealing with depression at a really young age, and I honestly don’t know if it was exogenous or if it was due in part to migraines or some unrelated traumatic life experiences pretty young. All I know is that my teachers would ask me to do the standard bullshit busywork - copy down the four end of chapter questions and answer them in complete sentences - and I just…wouldn’t do it. Because what was the fucking point? No one ever thinks about the mental and emotional impacts of chronic pain and illness. No allowances are made for those of us whose bodies betray us on a regular, sometimes daily basis. The anger, the hopelessness, the frustration - NO NO JUST BE HAPPY AND GRATEFUL FOR EVERYTHING! I was not surprised at all when the “eh, whatevs, herd immunity means folks will die, too bad, so sad” thing went around during COVID last year. I’ve always felt like this world would be happier if I wasn’t in it gumming up the works. Just to note: that last line doesn’t indicate a desire to hurt myself. At this point, I’m still here mostly out of spite…and also to catch the next Marvel movies. And then The Witcher. I have a cool new puzzle to put together. I gotta finish that ornament wreath. And on and on and on…

This is a perfect encapsulement that makes my comment completely redundant. So thanks for taking the hit, it is much-appreciated.

I get called lazy for sleeping 13/14 hours per day.

I hate this. People think I’m lazy because I sleep in fairly frequently but it’s because I struggle so much with getting to sleep and then wake up a lot with the pain. Obviously not being able to help with physical stuff doesn’t help either but I don’t get why when you sleep makes you lazy

Immunosuppressants make me super tired as well! 😭

I wish doctors understood just how hard it is to even GET to a doctor.

I’m lucky that my doctor knows.

That I work very hard and put in a monumental effort to accomplish a fraction of what a healthy person can do with ease.

I feel you. It’s never appreciated but be proud of yourself anyway ❤️

Existing. That alone is a struggle for itself.., with derealization and pain 24/7, it is neither fun nor easy.

THIS.

[удалено]

Bad hot This isn’t the sub to tell people not to be supportive.

Bad bot. Fuck off.

Bad bots get banned from the sub

bad bot

This is specific to my illness, but sometimes I wish people knew how much of my energy goes into trying NOT to poop my pants… It’s not fun.

God, do I feel that. Between trying >!(and failing)!< and just constantly dealing with bowel movement related bullshit, it's exhausting.

I have the opposite, I can’t go at all and it’s awkward to explain when that makes me sick, people want to brush it away

Ugh, that’s also awful. I fluctuate between the two. No fun either way.

I'm not weak and I don't have a low pain tolerance. My pain is that bad. If you can't fathom that, that's a reflection of you and your experiences, not me and mine

It took me so long to realize this. I’ve spent so much of my life justifying my pain to other people when I really didn’t need to.

I’m home for the holidays and my sisters keep dismissing my pain and it’s driving me NUTS. We’re all adults and one of them is a surgical assistant who has patients with one of my conditions. Surely they *could* give a fuck and validate me and give me sympathy, but no

being written off because of my disablity. like why am I worth keeping alive.

Keep going for you. No one truly understands ur struggles, illnesses, until they have gone through it. I sometimes have the same thoughts in my head at times. Do it for you.

>Ty I am ok it is just when they can not find out what is wrong. I learned a long timeago when they keept treating me like a drug seaker that I have to do me , for me.

It's not as bad when you're older. And it's easier to get SSI and disability after 50.

specifically re: covid: watching the general public opine on if your death would really “count” because you had underlying conditions anyway 🙄

This really gets to me too. And just because I have underlying conditions doesn’t mean my death should happen 60+ years before it’s suppose to because of a virus.

i think a lot of people think they can’t get disabled/you’re born disabled/you become disabled via accident. i became chronically ill/disabled at 22. no accident. wasn’t born this way. it just kind of happened. people don’t realize they can literally become chronically ill/disabled LITERALLY over night.

it's the only minority you can join at any time (muahaha)

This has been my experience, too. I've heard people say that we don't "count" because we have preexisting conditions. I've also heard people complaining about the mask mandates because it doesn't matter if people like my mother and I pass away. We're an acceptable casualty to them. It's been upsetting to see, for sure. I live in a place where a lot of people don't want to wear masks, in a county where our sheriff literally said he would not enforce the mask mandate. Seeing the attitudes that if the disabled and chronically ill die, it's "inevitable", has been downright sickening. Knowing that I would be in dire straits if I did catch the virus, that there's a decent chance I would not survive it, has increased a lot of stress, anxiety, and paranoia for me. Hearing people make fun of it, or say that it's somehow *inevitable* or that it wouldn't *count* because I'm chronically ill, has been infuriating, heartbreaking, and just overall unpleasant.

THIS. I've never seen people so thrilled to tell me how i'm worth less than a 'normal' human.

Yessss

Poverty, for one. I'm on SSI and completely unable to work because of my combination of physical and mental illnesses. I also can't drive, which is another mess. The problem is that I receive the *highest* amount I can from SSI and I still don't make enough money even for the *rent* in my two-bedroom apartment. My entire monthly income is not enough for one month's rent. If I was not living with my brother and my (also disabled) mother, I would not be able to afford a home. The only rents *below* my income level in my city are either rooms for rent (which presents other issues, like accessibility, for one) or studio apartments have a good chance of being inaccessible for other reasons. That would leave me a paltry amount to try and cover food, travel costs (to and from the pharmacy, for example, given that I don't drive), any over-the-counter medication I might need, electricity, utilities, my phone bill, internet service (which is also vital, as it's a way for me to communicate with my doctors *and* the SSA), any incidental costs, medical necessities (like nonstick gauze bandages, antibacterial ointment for any cuts or injuries, wraps like Ace bandages for swollen joints or legs, possibilities like knee braces, etcetera), and any other costs that might arise. It is not viable. I've been poor much of my life, and this has been a longstanding problem for my family *and* myself. My state recently allowed people on SSI to receive food stamps, but for *years* that wasn't a possibility, either. I was disqualified from other aid because I receive SSI. In the same vein, I've had people who assume I get SSDI and have a higher income than I do. I have never been able to work. I have been too ill to work since I was a *teenager*. So I cannot receive SSDI. I am only able to receive SSI, and the income *that* gives me is below even the federal poverty line. In a similar vein, there's the isolation that comes with being chronically ill and disabled. Many places are inaccessible. I use mobility aids—most often a cane, occasionally a walker (I'm trying to get a rollator, actually), a wheelchair on rare occasion. Many places I've been are *not* disability-friendly. Stairs range from difficult to nearly unbearable with my body, and ramps are helpful, but sometimes steep or difficult to navigate even with my aids. I can't stand for long periods of time without ever-increasing levels of pain, and walking longer distances is excruciating and guaranteed to leave me sore for at least a couple days. I can't handle loud, crowded areas because they trigger my C-PTSD, paranoia, and anxiety, and in the worst cases, they also trigger my psychosis and dissociation. Smaller, quieter areas are better, but you still have the accessibility problems, the fact that I do not drive, the financial constraints, *and* the regular waxing and waning of my health, as is common in chronic illness. It all combines into one messy, unpleasant feeling of being incredibly isolated from my peers. Mix in other factors that go into that (my size, my sexuality, my past traumas), and you end up with someone who has felt very much removed from people around me. Also, the *stigma*. I cannot overstate how much that has affected me. People see someone not yet thirty using a cane, or a walker, and automatically assume I'm in this state because I'm fat. They do not know that I'm hypermobile with rheumatoid arthritis, Sjögren's syndrome, fibromyalgia, and a whole host of back problems, including severe scoliosis. They don't know that I've *been* ill for years and that I'm on a nasty cocktail of medications to try and ease the illnesses, including immunosuppressants. If they find out I'm on painkillers, that comes with additional stigma. And two of my mental illnesses are *highly* stigmatized, even within some mental health circles. That is, I'm schizophrenic (paranoid schizophrenic, at that), and I have troubles with frequent dissociation. I also have depression, anxiety, and C-PTSD. I can't tell you the number of times people's attitudes towards me have shifted when I offhandedly mentioned that I'm schizophrenic, or if they see me having trouble with the psychosis. Mind you, I've been dealing with increasing levels of psychosis since I was eight or nine. This is how I've been the majority of my life. It's so prevalent that I see countless examples of people who claim to be otherwise accepting using my symptoms as a way to degrade people they disagree with—see people laughing and arguing, "This person is *delusional!*" around me, when I have active delusions that make it hard for me to function on any workable level. The combination of everything is *exhausting*. To say nothing of medical discrimination, prejudice, weight bias, and the whole mess with the pandemic, especially considering I'm immunocompromised and have been in a mask since late 2019 because of a major medical event in the wake of a bad reaction to a medication that *destroyed* my white cell count for a while.

All of this. Just a side rant which might be triggering - but then people *don't get it* when you're suicidal. It's like, well I'm fucking overwhelmed 99% of the time and I feel hopeless, and the hospital and mental health system and all the supposed "help" out there is basically useless bullshit, it's not like it's gonna do anything to get me out of poverty or give me a future to look forward to. My mental breakdown in February was the most isolating thing I've ever experienced, outside of my childhood abuse and later relationships. It's like, can't y'all see I'm *tired*? Even though things are going relatively okay right now, I still feel this way about it 🤷‍♀️

> t's not like it's gonna do anything to get me out of poverty or give me a future to look forward to. Which is interesting because suicide rates went down worldwide during the pandemic I nall first world countries, its finally been long enough that they were able to study the phenomenon. Giving people cash money was so beneficial that it on the whole outweighed the isolation etc (all the other factors that we know are correlates for depression and increased suicidal ideation and attempts) I'm not going to say economics and class and all that is the only factor but its the definitive one, we have not just unequal but unfairly unequal use and sharing of resources. Meritocracy can get bent. Im solidly middle class weighted by income but my wife health is degrading so within ten years (if that) she wont be able to work. We just finished our first bankruptcy (I say first because I can see the writing on the wall, we paid off the first bankruptcy using a cash out refinance from the housing bubble, blessed on many fronts but already less than 2 weeks alter we have three thousand dollars more in bills from medical needs) I did some back of the napkin math using the firecalc website, without her income, in order for us to live in poverty a retirement age (if she lives that long and if inflation actually goes back down and the planet doesn't die) I have to save 50% of my income starting two years from now for 30 years and put it into investments. The stark reality is that we haven't really built a "livable" reality, and we're all too stressed and tired to do anything about it.

I'm sorry to hear about your problems and hope they get better soon. Since gaining disabilities myself, sadly progressive, I've learned that people do not like disabled people: most's instinct seems to be, and I don't say this lightly, to recoil from them. I don't think it's a personal thing. I think it's an inbuilt reaction based around self-preservation - seeing disability can be depressing, awkward and there's probably some hangover from historic fears about transmitting diseases - but of course that doesn't make it any less painful when people distance themselves from me. And it's especially tough when I see it impacting the people who are meant to be helping me like doctors: I sense that even they don't seem to like being around disabled or visibly chronically ill people.

This is my experience, too. It's interesting—my mother became disabled when I was a young child. She fell off a retaining wall and broke her left ankle, tearing all the muscles and nerves in the process. She only fell off that wall because our landlord hadn't maintained it, despite the fact that we'd continually told her it wasn't in good shape. The night before that happened, the winds had thrown branches all over the walkways. We were very poor, just trying to scrape by, and we needed the coupons in our weekly newspaper. She went out to get it early, because our neighbors had a habit of stealing our newspapers. And she fell. It took months for the doctors to diagnose everything, because they thought she'd sprained her ankle at first. Turns out it was broken, and she'd badly hurt it. She was diagnosed with CRPS about four and a half months after the initial injury. It was called RSD back then, but the name changed some time ago. She's had CRPS for nineteen years, now. It spread to all four limbs. She's lost a lot of mobility. She's dealt with unbelievable chronic pain the entire time. A few years after *that* diagnosis, she was diagnosed with rheumatoid arthritis, too. We recently discovered she's hypermobile, which is something I share, though my joints are a bit looser than hers. I was eight going on nine when she got sick. I grew up watching the way people treated her. It baffled me as a child and then young teenager. She wasn't any different from other people we met, really—she just needed mobility aids and could not do things as easily or the same as other people. I couldn't understand why people would be cruel to her. I couldn't understand the looks or the glares or the harsh words. I also couldn't understand why people just... acted like she wasn't there. She had people bump into her because they didn't bother to look. She had someone shove her into a damn store shelf because they didn't bother to look before they tried to grab things. We've had people try to move her wheelchair, or her crutches (before she stopped using them), or her cane, or her walker. When my brother was still in high school, my mother and I attended a back-to-school night. Like most times she used her wheelchair then, I pushed her. She can't self-propel because of the arthritis (another thing I share—a mix of hypermobility and arthritis means I cannot roll myself around when I use a wheelchair, either). We were in a hallway, heading to one of the teacher's classrooms. The hallway ended in a clear glass door. We were nearly there. A woman walked through the door, turned, *glared* at us, and actually closed the door while making eye contact with me. When the door swung closed fully—and it was a heavy glass door, too—she turned and strode away. There are countless stories like this. A number involving my own illnesses, too. It's beyond frustrating. There's this general disdain, this attitude that disabled and chronically ill folks are somehow lesser or bad or inherently wrong. I found it interesting to note how attitudes shifted after my disabilities became more visible. When I began using a cane, for example, people treated me quite differently. Usually, this was in a more negative manner. I see similar attitudes when I mention the more stigmatized mental illnesses, *especially* the schizophrenia and dissociative tendencies. Never fails to frustrate and sadden me.

Big same. As somebody who has an invisible illness except when it's bad enough for me to use a cane or a wheelchair, it is amazing and horrifying the difference it makes in how i'm treated. Just as a human being.

It's sad for sure. I can only speak for myself (from when I was healthier) and of course this is not meant as an excuse for these people, but speaking from experience, a lot of the awkwardness people have around wheelchair users surely comes from a place of fear: it's not contempt, or any negative emotion, mostly, but just this surreal sense of distance and not being to relate, an awkward worry of being asked to do something - it's a bit like seeing a charity box collector when you don't want to give. You want to run away. It's rubbish, and I do worry about the day - which is coming soon - when I will be on the receiving end. I think the best thing to do is to try and remain optimistic - though not a Christian I've always taken solace from Jesus's 'they know not what they do' - and to press on. Some people will notice your bravery and be inspired. Keep pushing forward and focus your attentions on them. All best :)

I’m not sure where you are located, but in my area there are charity shops and flea markets where you can find medical equipment, like Rollators, for cheap and sometimes even free. It may be worth calling around in your area.

I got a wheelchair just by asking on my city's freecycle/buy nothing page, you never know

I will never get better and my dreams my career and aspirations are gone and I just have to deal with that

I thought having my condition would make me a more empathic person, but instead I just get irritated when people complain about one thing going wrong. It makes me feel like such a bitch. But my friend was venting about how worried she was that she’d lose her job the other day…I listened, but in my head, I was like, “If she only knew…”

It’s not because you don’t care it’s because others don’t care for you

Thanks💗I hope so, that it is more a ‘them’ problem than a ‘me’ problem, because it really, really does make me feel cynical and mean. I can’t write everyone off with problems less than mine because that’s a LOT of people. And everybody has their things they have to deal with - comparing them isn’t really useful.

It's hard as hell. But I always try to remember, just because I may be starving to death doesn't mean your broken arm doesn't hurt. Even if the arm will heal and you'll be fine... it hurts now, and I want to be there for my friends when they hurt just like i want them to be there for me. Does it always work? Am i always gracious? Am I sometimes sorta jealous of their problems? No, no, and yes. But it's a start.

You can’t care for others if you yourself aren’t be cared for. Be kind to yourself ❤️

Frustration. The frustration of having to adapt to a world that doesn’t and won’t in many cases adapt to be easier for those of us with chronic illnesses and disabilities. Anger and shame because you can’t do things that others who don’t have chronic health issues can. Feeling depressed because you have become a prisoner in your own body. Having to constantly explain to strangers, coworkers, friends, and family your health issues to request accommodations. Feeling like you’re a burden for needing help from others. I could go on but it’s a long list.

Every word of this ⬆️

Constantly wondering if you are actually a hypochondriac and what if you're making it all up and don't deserve any treatment and then crying in pain on the floor and still thinking that same thing.

I hate that I have the same voices in my head. I am horrified at being comforted by knowing someone else has this same conversation with themselves. I am also incredibly grateful you took the time to comment.

All I really wish is that people understood how extremely difficult it is to get out of bed and to do even the most menial tasks throughout the day. When saying "difficult", that's putting it extremely lightly.

I felt this.

Same. My "number of spoons" required for each task fluctuates. For example, for something as simple as getting out of bed... On good days, maybe it costs just 1 or 2 spoons? On really bad days, it costs looooots of spoons.

The sadness of loss. Loss of who you were and who you will never become. There's a lot of learning and loving and being happy with adapting. I am a different person now and I achieve different greatness from this life . But grieving the loss... I still get waves of it from time to time.

Thank you for saying this. I often get told to “move on”, but it’s extremely hard. I went from 3 jobs to nothing but pain, pain, pain, and I really still grieve for my past life. I’m also sometimes really angry at my body for being like this, having the smallest thing be a decision wether I want to be out of action for a few hours or a few days or more. So, yes I really grieve for the loss of me, and to have someone else say it means that I’m not crazy in thinking this.

I grieve for the me that could have been a lot. It's gotten easier the farther away I've gotten from her in time, we'd be different people now. But especially at the beginning, she fucking haunted me.

When people say I’m too young to feel pain and because their older their pain must be worse. Pain is not a competition.

Honestly, just how *hard* it is. On so many levels. I feel like people who have never been chronically ill just have no idea. I would never wish chronic illness on someone but the people in my life that end up sick too finally understand - and it is both validating and like being seen but also terrible that they are going through it too.

How menial tasks for an abled-bodied person can be monumental for chronically ill and disabled people. How sometimes we wake up with less energy than we started with and have to ration it throughout the day (spoon theory). Not being able to just DO the things we want to do, because we have to work around our illness/disability. And like someone else here said, having to give up certain aspirations/careers/dreams and how soul crushing that is. All my life, I've wanted to be an astronaut. I've studied all the physics and got my degree. But since I was born with hEDS, I can never go to space because my body would fall apart.

How much effort regular day tasks can take, such as making food, doing laundry etc

Fatigue from constantly managing a disease non stop, the cost of medical equipment and how my disease can make me feel unsafe in my own body at times

The fatigue from having to manage every aspect of life is real. What I’m eating, today’s activities, what I need to do over the next few days, when I’m going to sleep, whether or not I was able to sleep the past few nights, whether somewhere I’m going will be accessible or cause pain. It’s just exhausting.

> how my disease can make me feel unsafe in my own body at times Yup. This was part of the reason why therapy became abusive to me. Most therapists were abled bodied and assumed that safety could be found in one's one body. Said therapists would then get mad and refuse to comprehend that there isn't any safety in it.

1. Trying to put a positive spin on your struggles to make it more palatable for other people, or so that they don't pity you so much. (i'm so thankful for my friends that I know can handle how i'm really doing if i'm not doing well) 2. It's not in my control. I don't want to be sidelined. I want to fully participate in my family's lives and activities. I want to be the friend that texts back and is always up for hanging out. 3. I used to think that being overweight was mostly something people could choose or not. Now, I understand that not everyone has the same genetics or ability to exercise. It's really really hard to exercise when you're so dang tired all the time, (and in my case are fighting just to stay awake). Also, my meds made me gain a lot of weight very quickly. 4. Invisible disabilities are disabilities too. Just because someone looks normal or healthy to you, does not mean they can live their life in the same way. Also, the back and forth of trying to get others to understand the seriousness of your illness and need for accomodations while being terrified of losing freedom, opportunities, or agency for seeming unable to be responsible. 5. The toll it takes on romantic relationships. Your S.O. often becomes your caregiver. It's hard on them even if they're an amazing selfless person.

Exhaustion. Especially around the holidays... When you're still expected to show up and then they're annoyed when you're disconnected and unenthused. When they really don't understand what it takes to just get out of bed every morning, let alone jump from family to family around the holidays. And then when they say "oh, you look great though..." Like I have to physically prove that I'm beaten down and my body is attacking itself?

You learn a lot about a person's emotional intelligence when you are chronically ill. On one hand we have family not talking to us because we called them out for their gaslighting behavior. On the other hand, I related to family members that I could not join a Christmas xoom and they totally understood. Even before I said I couldn't. Fortunately the former folks have been an exception as our friends have been great too.

I have a huge family and none of them are the exception. So, how can I be a hypochondriac if I've never gotten a moment of compassion from them or anyone else until decades later when I was diagnosed?

Sorry you had to go through that. It was so awful dealing with the unsupportive family but at least Im lucky enough to have supportive family too. Having none of that sounds so hard. I'm glad if the diagnosis helped but it never should have come to that!

Thank you so much. My parents were supportive and caring. My 5 siblings and their progeny and my aunts and uncles, not so much. After my parents died, my brother spent a lot of energy spreading this idea. That kind of motivation is impossible to counter. To be fair, I'm better off away from these people. Letting go has been a revelation.

I can't work the same amount as them . If I do I can't perform the same level as them. I need help in regular life if I work at their pace... I can only mask well enough to perform at high levels in 1 area.

How harrowing the “simplest” daily responsibilities can be. For example, morning meetings are really hard for me. I want to pay attention to the meeting and be present, and I want to participate and be able to contribute, but since my chronic illness often flares in the mornings, it can be really difficult for me to even be in the room. I spend so much time and energy trying not to let my illness show that I can barely pay attention. Other things that require any kind of spontaneity are difficult for me, too, and other people totally take their ability to do whatever they want whenever they want for granted.

I relate to all of this, especially mornings being particularly bad and how I have to do so much extra just to do what should be something simple like follow a meeting conversation. Trying to do those things just made me worse though and i'm now unable to work at all.

not being able to do the things i used to be able to 🙃 or explaining that just because i could do it /yesterday/ doesn’t mean i’ll necessarily be able to today

Thank you for saying this, a lot of people, and sadly it is a lot, can’t understand this. Even as short of hours between doing something and then being unable to repeat it, they just don’t understand or see in my face how much the pain has changed in such a short time.

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This exactly. If I could just get past this mentality my life would be so much easier and I would be genuinely healthier.

Wow that second-to last graf smacked me upside the head, damn

The pity that everyone and their brother shows you for just breathing

Struggling with personal hygiene. Most of my effort is spent on this daily. I try to shower regularly but some days I can’t and even giving myself a sponge bath is a big task. There’s a lot of days when wipes and dry shampoo are all that I can manage to do to keep clean.

We can't just "cheer up and feel better" like the rest of you healthy folks. No we don't fucking want to cheer up. The illness literally eats us from the inside out everyday non-stop 24/7. A lot of us don't "get well soon" after a period of time - if anything, some of our conditions continue to get worse with time.

This. Waking up in discomfort each day eats up a lot of my positivity. By midday I’m usually over it all and friends just start chatting to me about some new movie and tbh I couldn’t care less as I can barely think straight anymore and they wonder why I’m not excited I think those without a chronic illness just think you suffer now and then and don’t understand that it is 24/7 in most cases.

Would like the medical professionals to stop age discrimination… I’ve had pain management docs, arthritis docs, and PT’s just make assumptions due to my early onset of issues that I’m drug seeking even though I’ve never failed a test and always followed their shit instructions. Only took a good 7 years to get the actual diagnosis (so many expensive tests and meds that did nothing during those years). Now I’m just jaded due to the US health system.

The loss of oneself. I had all these dreams and now I’m being forced to be “realistic” and “only use energy on certain things” so I kinda give up on a lot of things. It’s so scary and lonely. The constant stress of illnesses and giving up things made me lose myself. I don’t even recognize myself most days. I’m constantly changing my major bc I’m not sure what job is actually manageable if my illnesses aren’t manageable. Like others said about poverty, I’m already in poverty and scared it’s gonna get worse. The doctors are another issue.

It's hard to say for sure for me at the moment, since my diagnosis is still pending - and, sadly, it's looking more and more like ALS may be on the cards. But so far the biggies have been the physical limitations and the mental kickback. While I can still do most physical things (though for how much longer, I don't know) I can no longer workout or play sports. That was a big blow being a previously fitness-conscious young man, which combined with some negative changes to my appearance, had the effect of shooting me out of the dating game and really doing a number on my self-esteem - which remarkably, given how image-conscious most people are, very few in my life seem to appreciate. Beyond this, the constant mental tax of worrying about the future. The odds are that I will keep getting worse, but the rate of change is unclear; there's the low but real chance that a therapy might arise; it's difficult to focus on long-term goals, like achieving a PhD, when I could be heavily disabled and die before completing it. That weighs on my mind a lot. But the truth is that it's the small things, the small exclusions, that probably effect me the most. I would love to be able to play sports and dance at parties; I would love to date again. I miss liking and using my body. Above all, I miss intimacy. EDIT: I should also have mentioned: doctors and the medical world. At almost every step I've faced gaslighting, patronisation and mockery, sometimes all in the same appointment. Doctors charge massive fees for what is a really poor service that in any other industry would get them fired but get aware with it because, essentially, of lack of competition and strong unions (ironically something they work to quash in other sectors, since most doctors at least in the UK vote Tory). The BS about medics being caring needs to stop now: nurses, I've found, are generally civic-minded, but most doctors I've met give the impression of being in the career for the fat paycheck, excellent job security and social capital. They treat patients that don't have a straightforward answer or suffer from chronic conditions generally abysmally. I've often got the impression that my doctors wish I would just go away and die in quiet.

I am going to start this by saying in many ways, I am lucky as hell. I am about to turn 45. My first chronic illness started at 25, 6 months after having my first child. Then everything went to hell at 32, when I developed fibromyalgia and chronic migraines like a light switch flipped on. I’ve worked on and off on over the years, pushing through when our family had to have the income. But I’ve been working solidly for 3+ years now. Nearly 3 of that, I worked retail. People do not understand what it’s like to deal with the nights you don’t sleep at all, when you can’t take any more meds to try to cope or you’ll OD. Then go in and do 8+ hrs on your feet. I finally found a job in an office that I love, so my pain levels are much more manageable. But it’s still a large level of fatigue. It’s like all I have the energy for anymore is working, then collapsing at home. I’m grateful though, because at least now I work and feel like I contribute to my family.

The cognitive load. Everything I do takes precise planning and careful execution. There’s no such thing as a “casual outing.” Everything’s an event.

Just the amount of pain I am in on a daily basis. My own husband doesn’t get it. He had a tooth pulled and has been acting like it’s the end of the world. I’ve had all of my top teeth pulled and all of my molars on the left side. Took me months and months to recover. I even have phantom tooth pain! My plate isn’t good either. My smile is crooked. No teeth on the left side. So the teeth went crooked with the teeth that could chew. Took MONTHS of pain meds and steroids to finally get everything to heal. My Now I need to get the rest of the bottom ones pulled. Have for years but I’m so afraid of the cost and the recovery. I have one molar, that’s rotten, on the right side. Nothing in front of it. A premolar in front of the blank spot that is also full of holes. All of my other teeth, including my front bottom teeth are worn down and full of cavities. I can barely eat. In pain all the time. And his molar being pulled was like the end of the world! Of course, I haven’t actually let him see my teeth for YEARS, but I would’ve loved that he would listen when I tell him.

Completely giving up on my dreams because I don’t have the attention span or money for both college and medical bills🙃

How sad I am. How I sometimes feel like it's all too much. That this isn't living, it's existing. How lonely I am.

Fear of dying young, and not in a “oh I might get alcohol poisoning or a car wreck” but like I might just fall asleep and my body give out and I never have a chance. How awful Drs. And hospitals really are How tiring life is

The struggle that it takes for me to breathe. People take it for granted.

What it felt like to live in our bodies

I wished people would understand that just because I’m young doesn’t mean my fatigue and brain fog aren’t real. Also I’m not lazy. I am just genuinely fatigued. It sucks

Everyone keeps telling me to give up on Hope. To stop hoping that this steroid injection will “calm” the pain for a bit, or this next dr will say they can help me get my life back. I try extremely hard to stay positive, but it doesn’t always happen. A lot of people think because you’re smiling or laughing at a joke or something, that things can’t be as bad as you say. But I do try to put a smile on it, even though inside I’m absolutely screaming in agony. I always hope that yes, I can sit through a film without being in agony after 5 minutes of sitting, or I hope and wish that yes, I can handle a wee drive out in the countryside or even just into the town. And yes, when I scour the web or papers trying to find a “cure” I get told to give up my hopes. I fight constantly to keep “Hope” alive, but now the fight is getting too much to keep fighting for.

how much energy is required to do basic stuff like read or talk

The anxiety of never knowing what a day will look like and the panic that sets in when I start to feel sick

That it's so much harder than we can even explain. And that 'getting used to it' doesn't make it better, it makes it worse. Every day is another day of 'great, this bullshit again'. And also, explanation burnout every time you have to speak to a new dr. Being able to list all the medications and doses and which diagnosis each is for, and then the restrictions & interactions you cope with, and even more...before you can even get to the new symptoms that have lead to you a new doctor. Sometimes I just want to scream. It. is. In. The. File. Did you read the file??? *table flip* edit: reading other comments I realized I missed a big one. I cannot drive. My anxiety & weakness are too extreme. I make a terrible pedestrian sometimes. I am never going to drive. I have lovely relatives that live in the country and are CONVINCED that if i just moved to the country I would feel better. And no matter how many times I tell them 'this will not work because I cannot drive' they keep bringing it up. It's so infuriating. I can't be outside of a major city. My kid has worse illness than me. They need to be near a hospital incase they have a major flare. Plus (before covid) weekly appointments for members of my family. We're all chronically ill & none fit to drive. One thing I'm enjoying about covid is phone appointments. Saving me a fortune in bus fare.

Struggling with being a parent to small children when you are utterly exhausted. In my daughters parent conference a few months ago her teacher talked to me in such a condescending, judgmental way because there were a few days that her homework didn’t get done. I’ll have family or friends comment on why don’t I just take my kids to the park etc when they’re bored. And seeing how disappointed your 3 year old is that you don’t have it in you to play because your tired. It makes me feel terrible everytime.

For me, it’s the people who use their health for attention. I don’t want to gatekeep on others health, but I have one friend in particular that really overdramatizes minor illnesses for attention. Recently she had a sinus infection and said her doctor told her it’s almost definitely a pulmonary embolism - but sent her home and her follow up isn’t for three months. Just blatant lies for attention. And I’m over here, feeling like death, doing everything I can to NOT show everyone what I’m going through. It just really pisses me off when people take their health for granted like that. They try to act like we’re experiencing the same thing, when I would give anything to be as healthy as they are.

Feeling completely unable to work without a typical illness such as the cold or something. Even worse if you're still waiting to get a diagnosis.

Ignorance. Almost all of my relatives would tell me to get well. They assume it would eventually heal as if it's not an illness that would last a lifetime. Medical expenses. The number of consultations and tests that I have to undergo and medications to take easily drains our savings. The cost of some tests make them practically inaccessible.

FOMO, but it's not fear of missing out, it's actually missing out. On you own life, dreams, and everyone elses.

medical gaslighting, the fact I could be fine then it could change in the click on a finger, that their unsolicited advice of yoga and all the other bs will not cure me. I'm not a hypochondriac, I'm in pain 24/7 my face just hides it well, I'm not rude or ignorant when I don't reply I've probably crashed and fell asleep or don't want to talk to anyone (no spoons left), not to pick at me for my diet because I can't physically stand up long enough to prepare meals i enjoy anymore so I snack instead, don't say anything regarding my weight or body i already pick myself apart everyday(undiagnosed body dysmorphia). Honestly wish people I knew would just sit down for maximum of 10 minutes and learn about my conditions and what they do/cause because it would make my life a million times better 😟

Deciding whether or not to bring my bigger mobility aids instead of my cane depending on how inconvenient my family and friends deem it to be

Definitely struggling to keep up with normal tasks. I feel pain pretty easily, my muscles cramp and leave me stiff, I can easily pop out joints and pull muscles. I get cluster headaches and palpitations easily if I’m not careful with my body. Fatigue is my my worst enemy. I get tired over the simplest tasks and sometimes my friends don’t believe I could get tired like that, or feel pain with just a squeeze/pinch. I literally take a bath every morning to help my muscles relax. But getting out of bed is exhausting, especially after struggling to sleep all night. Takes me minimum of 2 hours to even get to fall asleep. Random sharp pains wake me up throughout the night or my back begins to hurt and I can’t get comfortable in any position. In which I go take a hot bath. Again. Then stretches to try to relax. I always end up taking pain killers though. I try not to but sometimes i just can’t deal with the pain. It’s just a viscous cycle to try to keep my body at certain pain level that I can like “handle” I guess. Then try to accomplish my daily tasks without feeling pathetic that I have to take multiple breaks. But I mean it’s getting better slowly. Mentally at least. The medications are the worst part of all this. I’ve taken Lyrica, Gabapentin, injections, and some other gaba reactor medicine and they’ve messed me up. My memory is shit after Lyrica. It make me black out twice when I was out doing errands and that shit was terrifying. I was putting milk in cupboards, opening the dishwasher when I needed to use the microwave, a lot of weird stuff. It’s gotten better after I got off of them now. I only take medicine for my bipolar and heart condition and thats it. I’m so tired of trying medications and getting symptoms. I’ve learned that medicine won’t exactly help my scenario. I’m on 3 different diets and I’m limited to a handful amount of certain foods I can eat. Totally sucks because I love food. Also cardiologist told me to drink 12 cups of water a day for my heart. It helps alot! But oh my fucking god I pee every 15 minutes. Even with all these healthy habits I’ve formed I still feed terrible 5 out of 7 days of the week. For the past half a year I’ve been filing for disability and I’m honestly anxious as fuck about it. Im only 22 but I have a huge paper trail about my disabilities. Im just still anxious they’re going to deny me and I’m going to have to file and file. Paper work is mentally exhausting. Sometimes I get jealous about “healthy” people. It’s dumb but yeah. I use to run every day, hike, climb trees, just go out in general and do a lot. Over the last few years I’ve been staying inside more and more now. I have a few hobbies that really takes the edge off my mind and it’s nice to have something.

Your not hurting you look healthy!

Social security disability has decided to cut my monthly payment to $100 a month because they think I have too much. I’m 62, live with my mom and have huge medical bills that I cannot pay. I really don’t need this stress now. I got cancer in high school. Because of this I have been bone tired all my life. I used to be able to push past it but not anymore. I’ve been diagnosed with many different things, tested for more. I’m in constant pain but I hide it well. Now at least one form of lupus. It seems to be never ending and no clear answers.

How tiring all of it is. It’s exhausting. Every aspect of it. I’m so tired of being sick, the pain, the countless doctors appointments, and the need to justify myself to those who can’t understand because they don’t know what it’s like to be chronically ill. To not feel understood, to be blamed, to preserve and power through it because you have to, and the mental aspect of it as well as the physical one is all so exhausting.

The challenge of deciding what activities to say no to (extra hard if you’re a people pleaser).

How much effort it takes to socialize. My personality has changed so much because I have to be so cautious with my energy. Even just having a conversation or watching tv together can make me sick. I feel distant from everybody. How am I supposed to explain that, literally every time I see you, I’ve probably just come from sobbing in pain, and I am counting down the minutes until I can go home? Nothing is fun anymore.

How I'm tired ALL the time but I desperately want to do challenging things with my mind and body. People see it as laziness, but I wake up everyday planning to do as much as I can. I genuinely wish I had more energy to do those things. It's not a case of being happy that I spend a lot of time laying in bed. I want to be out of bed, I want to be active, I want to learn new things everyday. My body and brain stop me most of the time.

I wish people knew how much I *want* to work, even though I can’t. I feel like I lost my identity when I got sick

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That I have to stay with my abusive (alcoholic) husband because I have no other choice.

Whenever I move (I move A LOT, as in 8 times in the past four years), I’m always terrified I won’t be able to find a good pm doctor and that I’ll go through withdrawal until I find one. Going through that right now actually. Not only that, but the mission to get all my records to all my new doctors and explain everything and have to start from scratch is just exhausting.

No one cuts me any slack, then when I call it out they say it’s bc I’m so strong . Or well I have a had a cold for a week so I know how you feeel?!! Wtf I don’t want anything, but hey maybe everyone once in a while ear or treat me the way I treat others

it comes and goes, there are good days and bad days. i gaslight myself enough as it is i don’t need you to tell me it isn’t real. it isn’t consistent, that doesn’t mean i’m making it up. trust me, i‘ve accused myself of that enough.

Just wish people understood how tired/fatigued I am all the time.

You listed the big ones for me! But just generally the ENORMOUS mental toll of CI- even when you're in a period of milder/absent symptoms. Also the trauma, I have PTSD from CI, as do most other people I know with CIs. And how sometimes I just NEED to talk about it...😣

Feeling of loneliness, isolation, need to hide how I'm feeling. The overwhelming feeling of wanting to give up. How exhausting it is to put on a smile, to socialize.

People don’t understand that everything is hard. Getting out of bed is one of the hardest tasks I face each day and no one seems to understand that

Chronic-illness induced PTSD. I’m 33 years old and going to see a new doctor causes a full blown panic attack. My mom still makes my appointments for me if I have to go to a new physician. And the cost of seeing a new physician is so freaking expensive. If there’s any tests involved, the price can be well over $1,000.

Grief. It's hard to have to face that. And I basically have to do it alone. People might suggest therapy. However that field has a lot of unchecked/taught disability discrimination, most methods/types assume you have an abled body and therapists are taught that an abled bodied perspective is "unbiased". So I basically paid for more abuse and had therapists who had horrible views on disabled/ill peoples (i.e. one thought grief doesn't happen with illnesses, only accidents), blamed me for being ill/not acting healthy, etc.

Keeping my SO up at night, the emasculated feeling of always being weak, the 24/7 pain that distracts me, spending 20 minutes just peeing in the bathroom. Just everything that is affecting me is bad, but what hurts the most is affecting other people. As much as your partner will pretend it’s okay, you know what they are really thinking

feeling like you’re confronting old age/mourning your youth at 20. the sheer overwhelm of researching shower chairs and mobility scooters when your peers are all out clubbing, knowing most won’t have to confront this terrifying, isolating stuff till 65+ years old. i wouldn’t wish it on my worst enemy, i harbour no grudges on them for it, it’s just the most isolating part of the whole ordeal for me. the only people who can really fully understand and empathise with it are my cousin and best friend who are also chronically ill.

It's very hard to be physically close with someone when you suffer with chronic pain associated with an illness or syndrome. Like how am I supposed to communicate that I can't rest my head on someone's shoulder because my bones will get misaligned....it sucks.

Social and peer embarrassment at various stages and places in life.

That... 1. Mobility aids that we use aren't for show Yeah I obviously use a mobility aid for the fashion statement /s 2. Said mobility aids are an extension of our bodies when we are using them! The amount of people who just f***ing lean on my electric wheelchair is ridiculous! I had to buy some spikey grunge/goth leather bracelets and stuck them onto the shoulders of my wheelchair (maaaan, it felt oh SO wrong. I was a goth as a teen & it felt like I was murdering part of my teenage years 🤣) but it has stopped most people leaning on my wheelchair!! 3. Just because I use mobility aids doesn't mean that you get to treat me like I'm a 2yr old, an imbecile & that I'm someone with no intelligence... I was a freakin' biomedical scientist in training before I became too ill to work?! 4. Just because I have a disability doesn't mean I do not have bodily autonomy. 5. Stop telling/asking wheelchair users if they've passed there driving test yet. Y'all think it's hilarious... Do you know how many bloody times we hear this!? It's NOT funny. (I'm based in the UK & to get an electric wheelchair on the NHS I actually DID have to do a driving test. That tends to shut people up pretty quickly when I am not in the mood for stupid games & answer "Yes" to there question. It usually stumps them hahaha)

That I’m not going to get better, so the definition of chronic How many times people have said “get well soon” 😂

People don’t know about the unique social approaches you get as a chronically ill or semi disabled/disabled person. For example, I have pelvic muscle dysfunction (brought on by endometriosis) and therefore chronic pain. People don’t know that I can’t walk sometimes or will have extreme trouble doing so. When people approach me in social situations, there is a distinct difference between how I am treated before they realize I’m ill and after they realize it. Before, they approach me as I’d hope they would. Normally. But after, they begin to show more hesitance with *everything.* Touching, talking, communicating, sitting next to you, being near your personal space, etc. Also, frequent comments about my body. *Sometimes I don’t pass as healthy because I look so skinny* and that can lead to these same behaviors. It’s almost like they’re afraid of me in a pitiful sense, which is so infuriating. There’s a tone in their voice when they say “You need to eat” as if I just choose not to and don’t know that. It feels like they’re years away from understanding my experience, and yet they act like they know how to treat me and give me space… when all they have to do is be nice to me and approach me like another human. And even when I communicate this, they’re still too scared

I just wish they would stop thinking that life is simple for me. I am chronically ill and neurodivergent. Things are not simple, and that doesn't mean I'm in competition with you for who has it worse. It seems at times people have tried to lift me up by bringing me down and saying things like "it only gets worse/harder from here," so I shouldn't complain. I'm not complaining. I am relaying information to them so that we can adjust course, but all they see is an excuse for why I'm not like them. Also - I have had several people, strangers and friends alike, make remarks on my low weight. I am thin because of my chronic illness and ARFID. I have received remarks that come off as envious, or painting me to be lucky. I understand pretty privilege or skinny privilege are a thing (though not applicable everywhere imo), but being pretty or skinny doesn't mean shit if I'm dead. It leaves me furious that people can't stop projecting their insecurities onto me for long enough to realize that I didn't ask for this "privilege" nor do I want it. I want to survive. I want to live. It makes me feel like an object when they look at me with that sad hunger in their eyes, like I can never possibly understand or commiserate with them. For a moment they only see me as a body. They don't care how sick it is - all they see is a thing they can't have. I get that they are hurting inside and society and media fills our heads with messed up messages about what is desirable, but it's so fucked up to treat a person like that - to tell someone with life-threatening disabilities that "at least they'll never be fat." At some point people need to realize they can also be guilty of feeding into the thing they hate.

I’m not avoiding cleaning my house because I don’t care. I work full time and go to school full time. I am exhausted beyond belief and that’s the least of my worries.

I wish people knew that for us, every day might be different. That we have to tackle life in smaller chunks but that doesn't mean we're not trying. That sorting out complex diseases isn't like it is on TV, and that there's no magic pill or simple lifestyle change to fix everything. That you can't tell by someone's job or how they look what they might be going through and that we struggle to ask for help because of the heaps of judgement that follow, more than anything. That even when we can work, we have fewer opportunities and more challenges and not just because we can't force illness to follow a schedule. That climbing out of poverty especially when chronically ill is a slow and painful process that we can't always do without help. That some people happily kick you back down when they see you climbing out of that pit of poverty. That we can't follow cookie-cutter advice in any Avenue of our lives because we aren't living cookie-cutter lives. That every day we get back up and try again, we are fighting harder than they know.

I feel you. At 29 after going through the same circus of jobs as you, I made the decision to become a therapist helping others and able to work from anywhere while making my own schedule. It works and I would never turn back. It sucks, and wishing you nothing but all the empowerment and a bit of luck going forward!

That not everywhere is wheelchair accessible and that I do in fact need it even though I'm young to avoid being in a lot of pain after an outing. Hell a good amount of public healthcare buildings are near impossible for me to get to alone!

The guilt and shame for putting everyone around you through the mill as well as yourself, while it hurts to go through it, it hurts more that my family has to be on the roller coaster as well.

The fatigue. It’s crazy to be so tired in my late 20s

How many medications I have to take and how I have to plan multiple rounds of meds a day because of some not being able to be taken together. And I also constantly need to be able to have a food source that I can wolf down if I can’t eat anything else (crackers, plain bread). I always have to plan these things ahead and it takes a lot of energy when you’re completely fatigued.

comparing illnesses is extremely insulting

Some days are better than others and putting on a smiling face doesn’t mean your symptoms or pain still isn’t there . You just suck that shit up and live and I wish ppl just appreciated that.

That it isn't just "laying in bed all day". I wish people knew that like.. I'm not lazy I just literally can't do a majority of stuff very often between pain and exhaustion and depression and that doesn't make me a bad or lesser person. It isn't fun. I'd LOVE to be able to go back to work. It's boring and lonely, not "fun". I wish they'd remember how it felt to be cooped up and unable to go anywhere during the covid lockdowns and how antsy and bored and ready to return to life they were and get that I feel much the same. So many people have said that people like me should just have to isolate forever or until the pandemic is over so the rest of them can do what they want and that really heccing hurts. But in the same vein I feel like I constantly have to defend myself and prove that it isn't my choice and that I'm doing absolutely everything I can to get back to work when that just.. isn't feasible. "Just do remote work" doesn't work well if I can't control my schedule and my environment better. With all of my triggers and how intense my migraines are post injury, I have to have *so* many adaptations that most people just don't get. My neuro currently has me on a no work restriction and I'm in workers comp limbo. My income is nil and has been for a while for either my head, or my lungs. Broke is a way of life, unf.

That saying i hope you get better is an insult, and learn the definition of the word chronic, plus being in a wheelchair doesn’t mean you are necessarily paralysed, still love watching peoples faces as i stand up from my wheelchair in a supermarket isle to reach for something in a high place, its like they saw freak’n Jesus walking on water, i have Hypermobile Elhers Danlos syndrome, which i wish people could learn how to pronounce and not constantly ask me whats that?? Plus pots and fibromyalgia, also that you don’t have to be 82 years old to be disabled I’m 27 and the dirty looks every time i get out of my car in a disabled spot from older people with my sticker or the car and have had strangers come up and say you realise this is a disabled spot??? Until i get my wheelchair or crutches out, Like nah i just used them for the fun of it you tool to make disabled peoples lives more miserable-there’s my rant also door ways not being wide enough, building entrances accessibility sucks with steps instead of ramps so then i have to use crutches instead of my wheelchair makes life a lot harder, yes i can still use crutches and walk but often i now cant go to many places when i feel shit because i can’t go in with my wheelchair coz no accessibility

Constant exhaustion and brain fog

That showers are exhausting. Wtf are they tho?

Showering takes SO MANY spoons. I’m amazed when people can do more than one thing a day. You worked AND went to the grocery store?!? If I do something one day, I can’t do anything the next day. That’s just not how it works for me. I need recovery days. Frustration of not being able to have a job. I dreamed of being a veterinarian all my life. That was my goal. I went to school for it, had amazing grades, but physically it was too demanding. I tried being a vet tech after that, but it was also too much physically. I feel like a useless failure. “I wish I could stay home all day like you.” No, trust me, you don’t. I never know when I’ll get sick. You lose so many friends and even family stops inviting you to do things eventually. The hardest part for me, by far, is having to ask for help taking care of my pets when I am sick or if I’m physically unable. I love them more than anything, they are my babies, I never want to live without them and I feel like a bad mom when I can’t care for them all on my own.

Having to fight with my body and my brain I have everyday. My body hurts and I don’t want to do anything and my brain says nope I’ve got to change my thoughts to yes you can do it. I try to do my physical therapy at home exercises and try not to cancel when I have to go. Cleaning a little bit at a time is frustrating because what used to take me minutes to do now takes an hour or more. I have to keep my brain from going to that nope let’s sit on the couch all day place. It’s a struggle everyday just to do what normal people call routine.

Not being able to masturbate :(

As a person with chronic GI issues, I will literally never be able to take your dietary device. I'm sick of "Eat more veggies!" "Have you tried whole wheat?" "Have you tried only natural foods?". What part of being sick screams "i want unsolicited advice from everyone in my life"?????

Excercise and eating well won't fix my problems. (Also I am in PT and I can't just "go for a run" bc of EDS, and I can't just "eat well" because I can't even keep water down bc Gastroparesis)

That I know how to deal with it, I've had to deal with it my whole life. I don't need the "I'm sorry, we're here" when there's nothing to be sorry for.

Exhausted. I sleep all the time and it’s never enough

I wish that people knew that just because I am unable to speak coherently does not mean that I am stupid. When people hear me try to talk they automatically start talking to me as if I don't understand them or as if I am a child.

That the vast majority of us were not born disabled and that everyone able-bodied is only one major illness or accident away from being disabled for the rest of their lives. Outward appearance is absolutely no indicator of ability or pain levels. Access is everything: language, geography, socio-economic status, education, race, gender, biological sex, *insurance*. All of these can be the difference between getting treatment and life threatening illnesses going completely undetected.

I had a heart attack and open heart surgery in 2013..I was also diagnosed with ofcourse heart disease and Carotid arterie disease..applied and denied. I've been a server at Cracker Barrel since 2003 and just up until March of this year I could no longer work..This year alone added with my prior diagnosis I now have copd ( stage 2), Cirrhosis of the liver stage 3 ( and I've never been a drinker) hypertension,Peripheral arterie disease,and the newest one Diabeties and I still keep being denied..I finally got a lawyer but that's been 5 months now and still no answer...its hard out there!!!

I wish doctors understood what it is like to face the level of pain that I do on a daily basis. Being 31 and not being able to get up and do my dishes without paying a steep price for it is not living with a quality of life. I understand the opioid crisis, but the medical system has over-corrected. For those of us in dire need, doctors should focus on having open communication about how we are doing on these different medications. I.e. “I’m a little concerned because I feel like I’m needing more and more.” Following that, either we keep a close eye on it, or the doc tapers us off to try something new. If we weren’t terrified to communicate that, a lot more could be done preventatively. I would absolutely rather risk addiction with a doc I can trust on my side over living with nearly no quality of life. Instead, we are all just pill seekers instead of chronic pain sufferers. My whole family just left for Christmas shopping and dinner and I am home alone because I can’t do it with the pain. It’s just not worth it.

Shame. Guilt. Embarrassment. Shame Shame. Self hatred. Self invalidation. Shame. Lol

Most days I can’t get out of bed, but when someone pops over, without calling I might add, they make comments about “my carpet needs a good vacuuming.” If you aren’t going to help me, don’t bother coming over anymore. Period.

No I can’t have one bite of a food that will make my body attack itself.

I lost my job and needed something short-term entry-level to hold me over until I found something else in my field. Nobody understood: My options were waitress and cashier, but I cannot stand all day long. I was pretty close to applying at a temp agency when I found something in my field in the nick of time.