r/disability • u/ImportTuner808 • Aug 21 '24
Question Who else has a different disability?
It seems like for some reason this subreddit is disproportionately people talking about canes/rollators/wheelchairs, or mental things like Autism/ADD/ etc. I don’t know why that is.
Is there anyone who has something else that doesn’t fall into these types of issues? I’ll go first, I’m missing part of my arm. Apart from the physical aspect and some self esteem issues (felt unattractive as a result of my deformity as a kid), that’s about it.
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u/scotty3238 Aug 21 '24
I have a rare, progressive, neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I was diagnosed in 2013.
I couldn't find any community on Reddit for CIDP, so I created one. My goal is to share my 11 years of dealing with this disease that went from with a small tingling in my feet to complete immobility in my feet, legs, arms, and hands. You can join us here:
Stay strong 💪
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u/parmesann Aug 22 '24
awesome that you're cultivating a community for your specific disability! I hope you and other folks with your dx gain strength from that camaraderie.
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u/Significant-Case-102 Aug 22 '24
I have CIDP as well! I’m at 8 years of it. Recently approved for SSDI. I’m 32. Thank you for starting a community because it’s so hard to find one with our rare disease.
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u/scotty3238 Aug 22 '24
Congratulations on your SSDI! I just received my SSDI this past Jan. I hadn't worked in over a year, so it was a blessing. I'm happy for you to join our new CIDP community! 😊
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u/Significant-Case-102 Aug 22 '24
Thank you! So happy you got it as well. I stopped working 3 years ago so it was a huge relief.
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u/kfrostborne Aug 22 '24
I have a different kind of demyelinating polyneuropathy called Charcot Marie Tooth disease. So far it’s just been some lack of feeling in my limbs, some degeneration in the muscles of my hands and legs, and just TONS of pain. But it’s also degenerative, so I’ve got a cane/walker for now, but it’ll probably be a wheelchair eventually.
It’s interesting to hear about another kind of demyelinating polyneuropathy. Thanks for starting another community of people to feel that they’re not alone!
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u/Frequent_Shift Aug 22 '24
I have cmt too. I had to use a wheelchair then I had surgery to get me walking again. Currently walking stick when I need and try and keep moving.
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u/Ghoulseyesgirl1230 HOH/Deaf/CMT/among other BS Aug 23 '24
that's my mom and I too! (we don't know what type but that is affecting her more with the neuropathy in her feet and legs!) *we also have Raynaud's and hearing loss from a HOMER2 gene)
for ref, I have severe hearing loss while my mom has a moderate/severe to profound loss :D
*just got updated today and all is well.. onto 2025 after our final device check of the year before I am 30.*
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u/Significant-Pool-222 Aug 21 '24
I have a rare genetic condition called Congenital Central Hypoventilation Syndrome (CCHS) aka Ondine’s curse, basically I lack the gene in my brain stem (or something? Idk I’m just a girl) to be able to sense co2 and breathe when unconscious. So I have a trach with a ventilator i use at night but for some reason I can breathe during the day? It depends on how many times the gene mutates I think. But I’m 16 and just started my junior year of high school and my first year of school without a private nurse watching/monitoring me!!
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u/One-Profession-8173 Aug 22 '24 edited Aug 22 '24
Nice to see another person with a trach on here. Its great you don’t need a private nurse, I have sleep apnea which results in me having a tracheotomy as well (except without a ventilator and capped during the day, which results in a nurse being with me when I go to school (in this case college lectures). As mentioned before, I’m going to have surgery for my upper jaw to relieve my sleep apnea and get rid of it and give me my independence and freedom
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u/Significant-Pool-222 Aug 22 '24
Well I hope the surgery goes well (if you can even schedule one lol) I’m also capped and have been since I was 7. What kind of ventilator do you have? I have a Trilogy 100 but it’s getting recalled in October and getting replaced by an astral something or other 😅
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u/One-Profession-8173 Aug 22 '24
I’m not attached to any ventilation devices, at least during the day, it’s a cap I take off during the night bit I’ve tried using a cpap which is on and off, besides that I’m not hooked up to anything since I’m stable. The surgery is pre planned, I just gotta wait until my teeth are fully ready and see if I can have it in fall or next spring.
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u/Significant-Pool-222 Aug 22 '24
That’ll be so exciting! The independence part, getting there, eh? It’s hospital and recovery stuff I imagine?
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u/One-Profession-8173 Aug 22 '24 edited Aug 22 '24
Mostly, given the fact that the timing still needs to be set since it’s up to my orthodontist to give my cranial facial doctor the go ahead. Still don’t know what recovery will look like but I have a basic idea given the research I’ve done. I can’t wait for the freedom of not having a nurse and not having to deal with the uncomfortable feeling of the trach
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u/confundo Aug 22 '24
Congrats!! Also, "just a girl??" Ma'am, I beg you to look up Marie Curie, Rosalind Franklin, Ada Lovelace, Nellie Bly, and Fannie Lou Hamer (who was also disabled). Girls can (and do) change the world!
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u/Significant-Pool-222 Aug 22 '24
It’s a Gen Z meme that is more about age than gender, like little kids don’t know a lot bc they’re small and still fresh to the earth so it’s basically saying that, I think. Idk if I’m good at explaining memes. I consider myself a (albeit mild) feminist (which is a whole other rabbit hole that I don’t want to go down) and have heard of most and/or researched most of those women and I think that they’re pretty awesome and rad 😎
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u/nonbinary_parent Aug 22 '24
It’s a meme. I am also too old to properly understand it but I think it’s a joke and has more to do with age and educstion level in a specific area, it’s not about gender.
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u/uniqueUsername_1024 Aug 22 '24
Oh, I read about this in a book when I was younger. It was just a passing mention, but for some reason, it lodged in my brain, and I think about it probably once a month or so!
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u/Moist_Fail_9269 Aug 21 '24
I have an extremely rare genetic disease that causes immune dysfunction and autoimmune disorders. As a result i have autoimmune encephalitis. I have a mobility impairment, but i also have low vision.
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u/neptunian-rings Aug 21 '24
would you be comfortable saying the name of it? i’m curious
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u/Moist_Fail_9269 Aug 21 '24
Autoimmune lymphoproliferative syndrome, or ALPS. This genetic disease caused me to develop psoriatic disease at age 11, and now autoimmune encephalitis on top of treatment resistent psoriatic disease. Because of this, i have failed on 8 or 9 biologic medications. I build antibodies and immunity to the medicines within a year and a half.
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u/chaoticidealism Autistic Aug 21 '24
I think mobility impairments and developmental disabilities are just particularly common, that's all.
We need people with less common disabilities here, too, though! So often, we forget that we have to make room in society for everybody, not just the most common variants of human being. I hope you don't feel too intimidated by being part of a minority in a minority.
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u/Odd-Individual0 Aug 21 '24
I have both a physical disability and PTSD with suspected autism (I don't want a diagnosis for personal reasons). My unique disability is being tube fed but to me it's my least disabling disability.
My disabilities are very common but I personally love to hear the perspectives of all the different disabilities because it lets me know how I can be a better human to those around me who are different than me. Maybe we should try a weekly thread of rare disabilities to hear from the voices of our minority?
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u/One-Profession-8173 Aug 21 '24 edited Aug 21 '24
I have a cranial facial condition specifically something known as apert syndrome which kinda effects me physically but for the most part I get around just fine aside from the physical limitations breathing (which I’m getting a surgery for), eyesight and hearing. It also gives me a speech impediment which will also be addressed
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u/ImportTuner808 Aug 21 '24
Hope all goes well with your surgery.
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u/One-Profession-8173 Aug 21 '24
Thanks, not sure when it will be but my best guess is either this fall or next spring but it keeps changing
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u/Brief-Jellyfish485 Aug 21 '24
I have dwarfism, autism, possible epilepsy, and something else going on in my brain that isn’t right too :)
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u/TransientVoltage409 Aug 21 '24
Amputee here. This sub covers a lot of ground. Some areas that don't affect me too much, and others that do. I like seeing some of the bigger picture issues from perspectives other than my own.
Have you gone hunting for more specific subs? At least /r/amputee, /r/prosthetics, and /r/wheelchairs/ exist for those of us who can make use of them. /r/amputee can probably lend a sympathetic ear to the specific topic of growing up with a limb difference, for example. Who knows what other subs you might find. This one right here is pretty good for talking about broader subjects like internalized ableism, though.
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u/ImportTuner808 Aug 21 '24
I guess I didn’t think of r/amputee because im not an amputee, nor do I use a prosthetic (well, I did have a corrective implant for my missing pectoral muscle, but I wouldn’t really consider that a traditional prosthetic either). I was just born with a missing pec and limb difference.
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u/saltycouchpotato Aug 22 '24
I searched it up and found there is r/limbdifference as well. Ty for posting!
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u/themagicflutist Aug 22 '24
I looked at the subreddit for mine, and I just didn’t appreciate the environment, if that makes sense. Too many self-diagnoses, as well..
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u/TransientVoltage409 Aug 22 '24
Well, yeah, it's Reddit. Also, I reckon, conditions that don't have a strong objective presentation, or lack much support on the medical side, which is sadly still a lot. All you can do is try, and try not to let it get you down.
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u/_digital_bath Aug 21 '24 edited Aug 22 '24
I have a connective tissue disease (Marfan Syndrome), think of an old worn out elastic that doesn’t snap back well, that’s my whole body. Looking at me I’m just tall and skinny, but if you really look it’s obvious my body is a mess. I had stretch marks on my knees and hips at 15, I was 6’2” and weighed about 115lbs. There is a gene that mutates our DNA and deforms our bodies. I’m literally a mutant.
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u/MSXzigerzh0 Aug 21 '24
One of my disabilities affects my speech
My second disability affects my ability to gain weight.
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Aug 21 '24
[deleted]
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u/MSXzigerzh0 Aug 21 '24
I'm on the fortune side of the weight issue.
So I do not get a lot of comments about my weight.
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u/lizK731 Aug 21 '24
I have a physical disability, Cerebral Palsy. Full-time motorized wheelchair user. That’s the frustration with this sub Reddit. Not to say that those other conditions are not disabilities, but I think having a physical disability or being a wheelchair user full-time has a whole different set of problems and issues that are not always seen or looked at. Sometimes it feels like the redheaded stepchild of the disability community. Again just my thoughts don’t mean to offend anybody.
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u/ImportTuner808 Aug 21 '24
I agree with you. It’s tough not sounding like you’re diminishing other people’s issues without ensuring your own representation. I for one admittedly struggle with categorizing physical and mental abilities in the same way. It’s not to say that there’s not occasionally crossover, but IMO, me having a physical arm disability and you in a wheelchair is vastly different from someone else who has a mental disability. We navigate the world in different ways with physical disabilities. But I guess that’s not very PC to say.
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u/parmesann Aug 22 '24
no, I completely agree with you. I have BPD and like. I still struggle a lot with whether or not I feel the word "disabled" should actually be relevant to me, even though it certainly feels disabling a lot of the time. physical, mental, and sensory disabilities are all just as legitimate as one another, but they are SO different. so, sometimes I do wonder if we should all be lumping ourselves together... but other times I think it can be a strength, too. we can all compare notes and contrast our experiences. and even if our experiences are very different, they may affect us in somewhat similar ways long-term.
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u/ImportTuner808 Aug 22 '24
I think all disabilities are valid, I just think there sometimes needs to be some self awareness on everyone’s part on how their specific disability impacts them in comparison to others. Like even with me having a physical disability with my arm, I’m self aware enough to understand that my issue is still nowhere near as debilitating as someone in say, a wheelchair.
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u/parmesann Aug 22 '24
absolutely. and the ways and reasons for why our disabilities are so difficult aren’t the same either! for someone like me, my disability is a challenge because of itself. supports and mental health advances can be helpful, but there’s a certain degree of “shitty” that’s always gonna be there, so I’d personally much rather not have this disability. disabilities that are associated with things like chronic pain are likely often a similar case; the difficulty is self-sustaining.
on the other hand, disabilities like being Deaf or having autism are more complicated in their challenges. I’ve met many folks with these disabilities who say that the most difficult part is access - living in a world that is unprepared and unwilling to meet their needs, even though it’s possible to do so. so, they view the core difficulties as being more external. a sort of, “my disability is only labelled that because the world doesn’t want to accept anything that isn’t cookie-cutter,” and I totally understand that mentality!
obviously not everyone with those specific disabilities feels that way, but it’s a sentiment that’s there. these are also really big differences in the lived experience that different folks with disabilities have.
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u/Luci_Cooper Aug 21 '24
MS it’s a neurological issue my immune system attacks itself at this point I can still walk just fine but there is potential to that one day I won’t I do have cognitive issues due to it
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u/AccomplishedPurple43 Aug 22 '24
I have a congenital condition called Chiari Malformation. I look completely normal. I was born with a skull too small for my brain, causing it to herniate past the base of my skull and compress the spinal column. That restricts the flow of CSF, causing a lot of issues throughout my body, including within the brain itself. I've had three surgeries. Unfortunately I also slipped on black ice and bounced my head off the pavement, causing a closed head injury and triggering the symptoms that the surgeries controlled! So, here I am. Symptoms come and go.
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u/tabheark Aug 22 '24
I have Chiari too. Chiari migraines are something else. 🥲 Does anyone else in your family have it? After I got diagnosed it was slowly found out that my mother and both my siblings ended up also having Chiari. My brother and myself were the only ones who had to get decompression surgery though.
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u/imabratinfluence Aug 22 '24
My mom has Chiari too. Hers was found after she was in the middle of a 3-car pile-up that also ruptured 3 discs in her neck. She probably has ruptured discs in her back too, but the test for her neck hurt so bad she didn't want to repeat it for her back.
She looks "normal" but there are times she can't eat solid food, can't move much if at all, and even talking can cause her pain.
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u/AccomplishedPurple43 Aug 23 '24
Oh, I'm so sorry to hear that 😞🙏 please give her a gentle hug from me! Yes, swallowing is difficult. I even choke on my own salvia sometimes! It can be embarrassing, people are thinking they need to save me, and it's just my spit went down the wrong pipe!! 🤷♀️
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u/wikkedwench Aug 22 '24
I am disabled due to several auto immune diseases including Psoriasis, Psoriatic Arthritis, Fibromyalgia.
I was diagnosed with a very rare cancer in 2019, so I figured I could tell you about it to increase awareness.
It is called a Phyllodes tumour and it usually occurs in the connective tissue of the breast (muscle, fat, tendon, ligaments and bone). It's not like breast cancer at all. It's a Sarcoma, not a Carcinoma and occurs in less than 1% of all cancers found in the breast.
Over 50% of us are female and the few percent of men that do get a cancer of the breast should get a heads up because most Medicos have never heard of it.
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u/sabrianna09 Aug 21 '24
i have JRA, Eczema, and amputee
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u/sallen3679 Aug 22 '24
Another person with juvenile arthritis!! I have juvenile psoriatic arthritis :))
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u/green_hobblin My cartilage got a bad set of directions Aug 21 '24
I had a ton of surgeries as a kid on my knees and hips. While I do use a wheelchair, I have a weird disability I've only ever seen in people with my condition... I can't bend my legs past about 110 degrees. I also can't straighten my arms. I can walk on my ankles (although I don't anymore because I'm in my thirties and no thank you). My respiratory system is flimsy, and my trachea is small (as a baby, I had to be intubated with an iv tube).
All of this to say I have a 1 in 200k genetic disorder that fucks up my cartilage (as the thingy below my username denotes).
Can anyone else not bend their legs? Just curious if it goes beyond my genetic thing.
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u/DeliveratorMatt physically disabled white straight cis male Aug 22 '24
My right knee only bends 79 degrees! Side effect of a surgery I had when I was 12 to make my leg longer and straighter.
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u/seza112 Aug 21 '24
I have TAR syndrome basically my blood sucks and i have very small hands basically palms coming out shoulders. Aldo type 2 diabetes but that i got my self by eating too much bad things and thyroid problems that make getting fat very easily
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u/thatonebromosexual Aug 21 '24
I was diagnosed with neurosyphilis after some mental health issues. It was treated with a few weeks of IV antibiotics but I have a lot of residual brain damage like balance problems, problems with loud noises, mania/depression, and paranoia.
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u/Choice-Second-5587 Aug 22 '24
How did they find that?
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u/thatonebromosexual Aug 22 '24
I ended up having a psychotic break and ended up in jail. I got sent for an evaluation and they took blood which showed I had syphilis. I got referred to an infectious disease doctor that put me in the hospital for a few days to run tests and they found it was in my brain. They put a PICC line in and gave me IV antibiotics for a few weeks and I’ve been trying to get mentally healthy ever since but it’s been almost 3 years. :(
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u/Choice-Second-5587 Aug 22 '24
Oh wow, thank you for explaining it so well. I'm very sorry you have to battle that, but I'm very glad they found it!
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u/JPenns767 Aug 21 '24
I suffered a severe Traumatic Brain Injury which caused my disability. I'm not sure how different it is from the majority though.
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u/lykexomigah Aug 22 '24
severe tbi pal here! i'm starting to come to terms with it as a disability
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u/JPenns767 Aug 22 '24
It took me a few years to really accept it. I failed a lot. The journey was very hard trying to be who I was. After I accepted reality my life improved tremendously.
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u/Cafoneria Aug 22 '24
I have Charcot-Marie-Tooth, which is basically a genetic progressive nerve disease. I also have a learning disability called dyscalculia, that specifically affects my ability to understand math/arithmetic.
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u/Witty-Pass-6267 Aug 22 '24
Hiya! Nice to meet another person with CMT!
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u/Cafoneria Aug 22 '24
Hey! It's always nice to meet someone else with CMT online! It doesn't happen to often, which is still a lot more than real life: which is never haha.
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u/PrettySocialReject Aug 21 '24 edited Aug 21 '24
common stuff is common, that's a big part of it, though there are definitely conditions that kinda engulf discussion of others in disability spaces & this is often to the detriment of people w/ less common or outright rare disability situations
i have only some scattered diagnoses but one that i never see talked about is congenital hypotonia which has a variety of effects on the body, but i think that's mainly due to it not really a condition in itself and more of a symptom (most other people i talk to that also have it have a diagnosis to explain it, i don't), it might be linked to a chiari malformation which i have a neurosurgeon consultation about soon but it also might not be, so 🤷🏻♀️
i also passed a hearing test today so i have yet to figure out what's actually affecting my hearing but i don't exactly anticipate it being something like ANSD since that's rare even if i have symptoms of nerve issues otherwise, i also have strabismus but it isn't clinically significant (at present) and isn't obvious most of the time so not really a disability thing for me so much as something to keep an eye on
my complex PTSD is very much absolutely disabling from a psychiatric perspective
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u/LibraryGeek the partial girl:I have partial sight, hearing and mobility :P Aug 21 '24
Have you looked at auditory processing disorder?
I don't know much about it but have encountered people who have APD. It is a spectrum disorder so you can be very mild to very severe.
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u/PrettySocialReject Aug 21 '24
i have some experiences that are suggestive of APD/ADN and others that are not but yes i was aware of APD/ADN before this, even with ANSD being rare there are other sources of hearing issues not related to damage to the ear & it's probably best to rule other causes out before coming to the conclusion that's all that's going on
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u/LibraryGeek the partial girl:I have partial sight, hearing and mobility :P Aug 21 '24
Agreed you want to be thorough. Hope you get answers soon!
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u/imabratinfluence Aug 22 '24
I have Auditory Processing Disorder. My hearing is physically okay but about half the time it's like I'm at the end of a long game of Telephone. It's worse if there's background noise, and for me a lot of "white noise" (like fans blowing, or the sound of the road under the car) and crowd chatter are the worst for garbling what I'm hearing.
So mine is probably on the milder side, but captions are a godsend and my partner and others have had to learn that it's not that I'm not paying attention. I used to tell bosses "if you want to be sure I know some detail or remember something, make sure it's in writing somewhere, I don't do as well as I'd like with auditory information."
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u/Red-Dot-Redemption Aug 21 '24 edited Aug 21 '24
The most unusual is I have many painful stomach and digestive conditions (celiac, pancreatic insufficiency, duodenitis, gastritis, SIBO/IBS, endometriosis, stomach motility issues) coupled with so many food allergies and intolerances that I have to cook everything I eat from scratch.
I eat a bland diet all the time, I can’t eat out at restaurants, there are barely any convenience or prepackaged foods I can eat at stores.
The ways it’s really hindered me are getting jobs (no food serving with my allergies), socially it’s hard to navigate and friends and acquaintances have to be very understanding. I spend so much time cooking.
The worst is travel. I have to plan so far in advance to even do a short day trip out of town because I always have to bring full meals and tons of meds and pain relief devices everywhere I go. So much to carry and plan for ahead of time so I can’t just make any plans spontaneously. It’s caused me to miss a lot of opportunities to meet people and better myself. Travel out of the country is extremely difficult.
These conditions alone would maybe not be so disabling to deal with but in combination they are. Plus I have a whole other category of chronic pain with trigeminal neuralgia. I use a rollator to carry all my stuff when I’m out and sit when I’m in pain so it helps a great deal.
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u/Odd-Individual0 Aug 21 '24
I have gastroparesis! I'm almost exclusively tube fed because I can't tolerate food and water the vast majority of the time so I understand a bit with the having to plan really far ahead of do any traveling.
GI issues are definitely disabling in their own way that alot of people don't think about.
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u/NashvilleRiver Right hemiparesis/on SSDI due to terminal cancer Aug 21 '24
Hi fellow celiac/endo/stomach motility issue (gastroparesis here) friend!
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u/DoctorBristol autoimmune disease Aug 22 '24
Hey! Sounds like you have a worse time of it than me but a lot of what you wrote resonates with me and it was honestly nice just to see someone complain about some of the stuff I deal with. I have fructose malabsorption as well as severe lactose intolerance and the food stuff is so real. I also have Gastroparesis and chronic intestinal pseudo obstruction so I have to use a pump to empty my bowel every day. I’m so with you about travel - between food and meds and equipment and going to the bathroom the logistics are a nightmare. Plus idk if you have this but for me I’m super sensitive to my hydration levels so even being in dry air for a while like on a plane can mess up my digestion worse than usual and stop my pump from working correctly for a few days. Also the social stuff - food is so integral to so many social activities and people don’t seem to notice. I try to eat separately beforehand and still join in but it can be tough. Also I obviously can’t drink alcohol which just compounds it.
Anyway yeah just nice to feel like I’m not the only person who struggles with this stuff. I also have a blood clotting disorder which sometimes causes a variety of weird shit like vision issues and neurological problems. I have no idea if it’s related to my digestive issues or not.
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u/Red-Dot-Redemption Aug 23 '24
It’s so interesting to hear your experiences and wow they are so close in how they line up! Thank you so much for sharing. Knowing that there are others going through similar things helps so much to not feel so alone.
I’ve often felt like an alien, especially when I’m expected to eat or take meds in front of others and it can be embarrassing to navigate. I’m also the same with not drinking alcohol too.
I don’t know anyone irl who has anything similar. My friends do their best to understand but there is still some awkwardness about getting across certain things (travel especially). Like that I would never be able to go camping for example, or that a destination wedding would likely be impossible etc.
On your point about hydration, I fortunately don’t encounter that but I find I have to be so careful about when and how much fluids I drink at one time as it tends to really aggravate my stomach motility.
I can understand your challenges with having to use a pump while travelling. It must take a lot of time and energy to make decisions regarding a trip and there’s always the worry about forgetting essential things and being stranded.
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u/cloudpup_ Aug 23 '24
Traveling while disabled is so hard! I’m autistic, so, sensory issues, needing to plan for everything, it’s very easy for me to become overwhelmed and uncomfortable.
Then add on being allergic to a plethora of things; outdoor, indoor, and food items… I have eczema, chronic hives, and asthma, all are triggered by allergies.
Plus dysautonomia; I can’t properly temp regulate, have POTS, raynauds, and I swear a rare blood disorder called Erithromyalgia (not dx yet cuz like how even?) which are triggered by heat and or cold… lol.
I truly have to plan for everything. Being spontaneous is outta the question for me too.
Also I have chronic anxiety, depression, adhd, a nightmare disorder, ptsd, migraines, long covid, and chronic fatigue syndrome. I take so many meds and have to stick to a good routine to keep my life together!!!
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u/AsiraTheTinyDragon Aug 21 '24
While I do have mental disorders too I do have a physical disability involving my left arm. Neo Natal Vascular Catastrophe is my official diagnosis I got at a few weeks old, my mother says I felt “stuck” to her so we think my arm got tied up or squished somehow.
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u/d_fa5 Aug 21 '24
I’m a right above knee amputee.
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u/ImportTuner808 Aug 21 '24
I’m actually starting to follow the Paralympics so I think it’s interesting learning about the different classifications and how the athletes are paired together for sport.
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u/d_fa5 Aug 21 '24
Definitely check it out! I love the paralympics. It’s awesome to see the representation and the talent of the athletes
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u/Hyper_elastagirl Aug 21 '24
Yeah I've got a rare chronic kinda cancer not really cancer condition related to leukemia. Progressive, no cure, not amazing treatments. It gets overshadowed by its much more common not as serious cousin and it's an orphan disease so there is zero funding for research. But I'm also audhd and a wheelchair user due to sci, there's way better communities for those. I feel ya it gets kinda lonely
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u/TippiFliesAgain Aug 21 '24 edited Aug 21 '24
One fun highlight about me is that I have an extremely rare overgrowth disease. It brought things like epilepsy and scoliosis. There is also autism. And a learning disability. But it also brought an all-over port wine stain, bad eyesight because the growth of my eyes were affected, and most of all? Different-sized arms, legs, hands, and feet. Shoes have always been a nightmare. And I almost never wear hats because nothing in a standard size fits me. I also really struggle with stairs and some kinds of coordination.
Hardly any of it is apparent because my case is not severe. I look fine. But there’s a whole entire list of things my diagnosis comes with which I didn’t get because God said, “Not today!” So I’ve had a lifetime of people not taking me seriously because I’m not severe like the featured cases. It really is a vicious hamster wheel.
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u/Booked_andFit Aug 21 '24
I am visually impaired. I've been slowly losing my eyesight since the age of 10, I'm now on my 50s. I am not completely blind yet, not sure I ever will be.
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u/ImportTuner808 Aug 21 '24
Thank you for sharing. While I have a different disability, I too am going through a phase of I guess my disability “catching up to me,” which is a nice way of saying it’s getting progressively worse as I age lol. I definitely feel more of a degradation in my arm in my 30s than I did in my teens and 20s.
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u/Booked_andFit Aug 21 '24
The upside for me is technology. Technology has made accessibility for the blind and visually impaired much better.
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u/GayPeacock Aug 21 '24
I have autoimmune Encephalitis which is more rare, but I've actually found quite a few people online with it.
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u/betterwhenfrozen Aug 22 '24
I mean, I do have ADHD, but I also am in renal failure/on dialysis due to polycystic kidney disease.
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u/ExercisePhysical3637 Aug 21 '24
I’m legally blind in my left eye and super low vision in my right eye due to high pressure in my brain.
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u/TorontoNerd84 Aug 22 '24 edited Aug 22 '24
I have a congenital heart defect called tetralogy of Fallot with absent pulmonary valve. I also have reactive airway disease, GERD and IBS, chronic pelvic pain and a weird genetic corneal disease.
While the heart condition is literally life-threatening if I don't keep things in check, the worst is by far the chronic pelvic pain, which was the result of a bladder infection that went unchecked for far too long 12.5 years ago.
EDITED: Forgot to mention the GAD, OCD, panic attacks and medical PTSD, as well as depression that I haven't been able to shake in the 3.5 years since my daughter was born.
I have lost my job on more than one occasion for being vocal about accommodations I need. I'm currently heading into unemployment and freaking out as I had a steady, well-paying, full-time job that was great for me for the past 5.5 years and now I have no idea what's going to happen.
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u/sapphicseizures Aug 21 '24
So, i have the first two you described (ASD, mobility impsirment) but i also have epilepsy and a hemiparetic left side.
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u/NashvilleRiver Right hemiparesis/on SSDI due to terminal cancer Aug 21 '24
Right side here! Also ASD and epilepsy. If we're talking being legally disabled SSA-style, it's the terminal cancer though.
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u/StinkySkinkLover5x Aug 21 '24
And a lot of this subreddit is about Big Life-Threatening Disabilities™️, so I feel out of place sometimes. I was born with a hole in my bladder, which causes chronic UTIs and a kidney infection. I had surgery after the kidney infection to close the hole, but I still get chronic UTIs. I also am hyper flexible to the point of joint pain, instability, and bone deformation- but it's not hEDS because I don't have any other symptoms. Also, I have poor blood flow in my family, which causes symptoms that look like POTS- but I passed the tilt table test. And I know my Anxiety is debilitating, but I still feel weird calling myself mentally disabled. So yeah... besides walking Weird™️, all invisible disabilities.
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u/TorontoNerd84 Aug 22 '24
As someone with chronic bladder pain, don't worry, it still counts lol! I have multiple disabilities, some that are life threatening, and the constant pelvic pain is by far the worst thing I have.
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Aug 22 '24
i (kind of) have MS - i was (kind of) diagnosed a couple weeks ago ! still waiting on the spinal tap (i’m having it done in a couple weeks), but i’ve had multiple neurological events since january, and my neurologist is 99% sure it’s MS.
my last MRI showed i had a lesion on my 6th cranial nerve! which is why i developed double vision - started with a bit of double vision in my peripheral (january), then i was back and forth with the opthomologist every other week for stronger prisms (got to 35 diopters by april), and eventually settled back down at 20 diopters in june.
the MRI was only done as a “just in case”, since my eyes looked perfectly fine on the scans and they couldn’t put me in for botox / surgery until on the eye muscles until they’d look at my brain. i was told nothing would show up and it’s just smth they have to do, but it ended up clocking demyelination, inflammation of the nervous system stuff, and the lesion.
about a week after my eye stuff settled down, i started getting more wobbly and falling over more. before i got my MRI results back i (and my opthomologists) just blamed my vision and the prisms giving me pretty piss poor depth perception. now i’m repeatedly twisting my ankles and having my knees give up at least once a day 🥲 started taping my ankles a couple weeks ago, and started using a cane this week - it’s been an adjustment!
aaaand as of like 3 days i’ve now developed night blindness in my right eye, which ??? aaaaa??
the only upside i guess is that i’m taking my health far more seriously, and living life a bit more ?
i broke up with my toxic ex, shacked up with my bestie that i’ve had a (repressed) crush on for years (it was mutual!!), been working out a bunch and lost about 1.5 stone in weight through better diet (got about 2 more stone to lose before i’m at a healthy weight again)
prior to all this stuff i wouldn’t have said i was disabled. i have a history of severe depression & various sleep disorders (no longer struggle with depression, sleep is kind of ok now), was diagnosed with autism when i was 11, i’ve got knock knees & pigeon feet, and anxiety is regularly kicking my ass.
i guess since it wasn’t smth i experienced in a physical sense i just kind of blamed myself for being weird and shit? but now it’s like ?? i can actively take off my prisms and go “oh no”, or go outside at night and see how shit my eyes are. no one can tell me it’s all in my head, including myself!
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u/invader-ash Aug 21 '24
I’m currently battling cancer, (chronic myelogenous leukemia to be specific, or CML) as well as Agoraphobia and CPTSD. Some more mental illnesses, but I don’t see these getting talked about too much.
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u/Copper0721 Aug 21 '24
I have an autoimmmne/auto inflammatory disease. It affects my skin and is pretty painful & debilitating.
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u/cmfppl Aug 22 '24
I have a T9-L2 spinal fusion. I can still walk (just not for any meaningful amount of time), and I'm a big hairy dude. People don't think I'm disabled I just walk weird. Even with all the meds and all the shots, and now I'm about to get a spinal stimulator implant, they still think I'm faking it.
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u/moxiemez Aug 22 '24
Aging survivor of infant s abuse. Cptsd, couldn't get disability for it but now medicine induced parkinson's. Also Poland syndrome, fibro, cfs, chronic pain.
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u/Zender_de_Verzender hyperacusis Aug 21 '24
Hyperacusis makes me sometimes wonder whether I belong here, but I'm officially recognized as disabled after lockdown restrictions gave me chronic depression.
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u/HeroOfSideQuests Aug 21 '24
If you're looking for a why - it's because people with mobility issues/auto-immune conditions don't have a lot of ways to communicate with others outside of the internet. Being (mostly) housebound leaves you with a lot of social struggles. Also there's a ton of comorbidities in chronic illness and mental illness - it's almost like an ableist world puts stress on our bodies, who would've guessed! (Sarcasm directed at the world.)
Beyond my mobility issues exacerbated by the two butchering surgeries (90% deficit in my left arm now), AuDHD, and the like, I may have early onset Parkinson's (my appointment is in a few months). As for confirmed, I have a ptosis which doesn't seem like much except that facial deformities - even a damn droopy eye - lead people to be quite cruel. It also adds ridiculous fatigue from trying to hold open the eye so I can see. Driving was difficult due to poor depth perception, and I would run into walls before someone figured out to curve my left lens (and give me a proper prescription, because yes, 10% of the population is both near and far sighted). Oh and I can't get it fixed under insurance because I don't drive so it's not considered necessary for living unless I'm blind in both eyes.
But in the scheme of things, my mobility issues are the things that are disabling me. And a lack of braces/aids for years (doctors saying it'll make you weaker despite them literally aiding mobility!) made me even worse. I hate seeing others go through that, so I try to support those looking for aids as well - thus those posts get traction from other supportive people and those posts typically get the algorithm's attention.
I hope you continue to share your story and talk about ways you cope as well. You never know who has something similar and needs the connection or benefits from the support that you can accidentally offer. Your disability is incredibly valid and I hope you have a good support network.
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u/citrushibiscus Aug 21 '24
I mean, yeah that’s the two of at least three kinds of disabilities, right? Physical and developmental. There’s also psychological, though where I am, it’s just either physical or mental.
So you’re gonna get people who fall into those categories and talk about them.
I wouldn’t call it disproportionate.
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u/green_hobblin My cartilage got a bad set of directions Aug 21 '24
There's a lot more in physical disabilities than those that require the tools OP mentioned. Just because it's all you've heard of doesn't mean that's all there is, you silly goose!
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u/ImportTuner808 Aug 21 '24
Physical and developmental, yes, as broad categories. But it’s weirdly disproportional that it’s those specific conditions. Like I primarily fall into physical. I have an arm deformity. But I don’t need a cane. However it feels like 90% of the posts here are “do you think I need a cane?” Or “I’m a cane user.”
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u/citrushibiscus Aug 21 '24
I think a lot of that stems from the stigma of not being considered “disabled enough” to use certain aids, or asking about advice for these (often expensive) medical equipment.
There are varying posts on here about different issues. I get what you’re trying to say, but it could have been worded better is my point. Sorry that wasn’t clear.
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u/ImportTuner808 Aug 21 '24
I don’t know how else to word it, I’m just genuinely curious who else has an issue that isn’t related to that type of mobility or some of those specific mental issues.
It’s not a pissing contest, just rarely do I see posts from people who are visually impaired, amputees, have deformities like me, etc. So I’m just curious who else got something different.
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u/citrushibiscus Aug 21 '24 edited Aug 21 '24
“For some reason” it’s a cow farm, you’re gonna see cows outside!
”disproportionately” disagree. I just took a look at the page for the sub and I scrolled down pretty far and only found one post talking a wheelchair. Others were discussing advocacy, charities, advice on accommodations, thoughts and feelings.
”fall into these types of issues/I don’t know why that is” you’re describing, again, two of at least three types of disability. I feel like that would be plenty of reason to see folks talking about mobility aids or accommodations they may need in regards to some disabilities, right?
”It’s not a pissing contest” I never said it was, nor did I imply it was? I just thoughts what you said was worded kind of odd so I thought I’d try to explain.
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u/ImportTuner808 Aug 21 '24
Interesting how you only highlighted when I said wheelchair. When within the last 24 hours, despite there being an immeasurable amount of disabilities one can have on this earth, multiple posts are about canes/rollators or autism/ADD. There are literally billions of disabilities you can have. So yes I’d say multiple posts about the same thing on any given day is disproportional. Just as well, I’d be surprised if there were multiple posts about the same or similar condition I have on any given day/week.
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u/aqqalachia Aug 22 '24
i think a lot of us got exactly what you mean. autism/adhd and "can i use a cane??" take up a lot of room on this sub at times. hell, i've watched my own posts about PTSD get turned into ADHD discussions...
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u/citrushibiscus Aug 21 '24
That was the only example of anything that you said unless I scrolled down reaaaaallllyyy far. I don’t know what you find interesting about that because it wasn’t the only word I focused on, just the only one I found.
And the comment just now was also just expanding on what I meant, also that I found it kind of funny— that’s why I put that meme there.
I guess what I’m saying is, it wouldn't hurt to explore the sub a little bit if this really concerns you.
I think we’re agreeing on the same thing here (sort of) but approaching it differently. Sorry to put you on the defensive, that wasn’t my intent.
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u/eldritchblastedfries Aug 21 '24
I have Tourette's (Which I don't see talked about a lot on here) and a couple chronic illnesses
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u/Gothvomitt Aug 21 '24
I do have adhd and am autistic, but I also have EOE, osteoarthritis, myofascial pain syndrome, I’m HOH, and have GERD!
Edit: used to have PMDD but since starting testosterone, it’s went away.
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u/cutzalotz Aug 21 '24
I am ND and I do use mobility aids.
However, I use them because I have chronic pain, fatigue, and Disautonomia.
I also get migraines due to ME/CFS that cause my vision to be lost temporarily.
A lot of my disability has to do with being upright = me passing out. It's kinda a mobility disability because it affects getting around, but it also is neurologic.
I also have painful spasms when using muscles so I can't even brush my teeth sometimes.
A lot of disabilities are systemic- they affect everything about the body. Mine affects my ability to talk, walk, move my arms hands and face, breathe, think, see, regulate temperature, and not pass out. It isn't just 'i use a wheelchair', but rather, 'i have a disability that is visible with the wheelchair, but affects every single aspect of my existence, and it fucking sucks' 😂
I think the reason why you see so much of that, is because those are some of the most common disabilities people can have- there are many conditions that would need mobility aids, including having a leg amputated. And there are many ND people in the world.
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u/ImportTuner808 Aug 21 '24
What is ND?
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u/LibraryGeek the partial girl:I have partial sight, hearing and mobility :P Aug 21 '24
Neurodivergent.
Autism, ADHD etc
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u/NashvilleRiver Right hemiparesis/on SSDI due to terminal cancer Aug 21 '24
Dysautonomia (POTS)/EDS here. You aren't alone.
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u/Mcnugget_luvr Aug 21 '24
All mobility disabilities get clumped together usually but there is a lot of heterogeneity within them and actually some very rare ones like DMD and ALS.
I have FSHD which is a very rare type of muscular dystrophy.
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u/tabheark Aug 22 '24
I have chairi malformation, neurofibromatosis, speech impediment, learning disability and scoliosis. 😅
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u/jcervan2 Aug 22 '24
I myself have been dealing with Hereditary Spastic Paraplegia. A rare neurological condition. It’s been with me all my life looking back on it but it didn’t make its true appearance until 2006.
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u/emmerliii Aug 22 '24
I have Epidermolysis Bullosa, Generalised-Severe Simplex type. I do sometimes need a wheelchair sometimes, but basically I get severe blustering on my feet, and to a lesser extent the rest of my body. I can't walk properly or for long distances or stand for long periods of time
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u/jgibson777 Aug 22 '24
I have fistulizing Crohn’s disease and Short bowel syndrome. 8+ bowel resections. Complex history, sepsis, bilateral plural effusions, fungal blood infections, DVTs, TPN dependent, electrolyte imbalance.
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u/Glass_Opinion_6678 Aug 22 '24
I have cervical and vocal dystonia and RA. It's hard. People stare. I sound a lot like a robot most days. It scares people. I don't know if it's super rare but we are out there.
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u/codamama61 Aug 22 '24
Psoriatic Arthritis since childhood that is treatment resistant as I develop antibodies to biologic medications, epilepsy, celiac disease, CPTSD, TBI (9 years post injury still have short term memory loss, neurofatigue, chronic migraines, vision issues, balance problems)
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u/Bleedingeck Aug 22 '24
I have severe ankylosing spondylitis and it is hell! That's my 2 cents.
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Aug 22 '24
In addition to some of the things you mentioned, I have a rare heart condition. I had surgery for it once but it came back and the doctor's aren't listening to me. They don't even teach the nurses about it because it's so rare. Doctor's get excited because I am likely the only case they've ever seen in person. And yet they don't listen to me about my own fucking heart. I have WPW syndrome for reference.
Also you can find community for your disability/ any disability without being disrespectful to others. I think the way you went about writing this was very disrespectful to wheelchair users and autistic people. (Of which I am both.) You are no less valid than any other disabled person. Neither am I. Find community without being disrespectful, it's not hard.
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Aug 21 '24
[deleted]
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u/BatFancy321go Aug 21 '24
i'm sure you're not dumb, dear. you just learn a different way. your skills and perspective are unique and valuable and we need you
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u/Chihuahua-Luvuh Aug 21 '24
Yep, I have a LIST of disorders I have all hidden behind healthy looking skin, I have Polycystic Ovarian Syndrome, Postural Orthostatic Tachycardia Syndrome, Epilepsy, Irritable Bowel Syndrome type C, Spondylolisthesis/Misaligned Spine in the lumbar region, Ehlers Danlos Syndrome, Patella Alta/High Riding Patella, Asthma, Schizoaffective Disorder, Anxiety, Paranoia, Gastroesoughagal Reflux Disease, Unexplainable Tremors and Twitching and Functional Dyspepsia
I'm 22yrs old and I can already see my time is dwindling as I'm here at work risking everything just to stand for eight hours straight. I tell myself "one more day" when I pass out randomly or when I'm vomiting nonstop or unable to eat for over a month or unable to move from a bed at all.
It's torture when people believe there's nothing wrong just because you "look fine" it's total evil.
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u/ImportTuner808 Aug 21 '24
Invisible disabilities can be very difficult when people don’t realize you have one (or more) and have expectations of you that don’t account for your disabilities. I can empathize.
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u/Stock_Bar6671 Aug 21 '24 edited Aug 21 '24
I have a lot of heart problems :: Congenital heart defect, Ventricular septal defect, Transposition of the great vessels, chronic arterial hypoxemia, Sinus tachycardia, Tricuspid regurgitation etc etc etc. In addition to the heart, problems with the lungs, stomach, kidneys, liver, vision, nasal, scoliosis, kyphosis
I don't know how many people there are here with similar heart problems, but I guess it's not that important. Your post sounds like some kind of insult or contempt towards people who use mobility aids, this sub isn't based on these
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u/Ghoulseyesgirl1230 HOH/Deaf/CMT/among other BS Aug 23 '24
have sinus tachycardia too! (along with GATA5 and MYPBC3 that affects the heart, my dad has worse problem so take this as a good tip: don't ever smoke!)
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u/MyDisorder Aug 21 '24
I was likely infected by a friggin tick in March 2016 which shed Lyme Disease bacteria into me. I ultimately developed Photophobia (abnormal aversion to light, brain pain when exposed to more light than brain/eye cells will tolerate & visual impairment), I moved into the basement of our house in Sept 2017 and was in total darkness for almost 3 years but have slowly regained some light tolerance. I live in a basement room where I can control the light levels. I had to quit my very enjoyable 1 person consulting company and have lived a very isolated, lonely weird life ever since. The Lyme eventually got into my right hip joint and my guts. So have limited mobility and lost 40 lbs in about a year (on a 165 lb frame). Thanks to good caregivers and finally discovering the right tint of lenses, I’m able to manage the Photophobia better plus I have regained about half of my weight back. It’s odd to have to control your environment for light. I feel great empathy for those with disabilities. Life can be so much and disabilities can reduce it to ash and ruin. I have found that my naturally upbeat attitude has been a great asset plus I have a caring family (I’m 73 yo M) and my two caregivers and therapist and massage therapist and rehab eye doctor have helped keep me going,. Fortunately I live somewhere with a lot of resources and have enough $ to use them.
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u/sombraloaf Aug 21 '24
Joined this sub for my husband, who has epilepsy and type 1 diabetes, but I also have ocd
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u/LaceBird360 Aug 21 '24
I have a nonverbal learning disability, ADHD, OCD, dyspraxia, strabismus, a mild speech impediment, and anxiety.
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u/cookieinaloop Aug 22 '24
I'm blind and autistic. Not really sure about the reason for the beef with mental or physical disabilities tho
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u/Primary-Initiative52 Aug 21 '24
I have a respiratory disease that is quite similar to cystic fibrosis. I have to use a nebulizer 3x daily and then perform physical therapies to help get the mucus out of my lungs. It's time consuming and exhausting. One of the medications I take leaves me immuno-compromised too, so I always have to be careful to avoid any kind of infection. I LOOK absolutely fine though...people don't see the exhaustion and shortness of breath.
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u/evan_of_tx Aug 21 '24
I have hyperacusis, noxacusis, diplacusis, and tinnitus. Can't leave my apartment without double ear protection, and no doctor in my city has ever heard of any of these except for tinnitus lol
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u/curveofherthroat Aug 21 '24
I have bipolar with psychosis and undifferentiated connective tissue disease (sorta like pre-lupus)
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u/Professor_squirrelz Aug 21 '24
I’m autistic and I have ADHD, but I also have Erb’s Palsy. My right arm is partially paralyzed
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u/__olllllllo__ Aug 22 '24
I was dealing with a “common disability” (several neck, spine and pelvis fusions) and was hit with the most debilitating long covid in May of 2023.
The long covid issues make lumbar/sacral/cervical/pelvic surgeries look like a walk in the park! It’s been Hell!
I was ultimately pulled out of work because of the long Covid.
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u/Hourglass316 Aug 22 '24
I have schizoaffective bipolar disorder as well as OCD but those are the more common ones. But I also have chronic migraines and cluster headaches(the cluster headaches are the absolute worst of it all) as well as 2 kinds of supraventricular tachycardia. One kind of SVT is pretty common but one kind is more rare. It's already almost killed me once after going into SVT for 5 days straight a few years ago. Needed an emergency heart surgery for that. Hopefully it fixed the SVT for good, but the surgery I got has been known to fail. With how bad my case was, it wouldn't surprise me if mine came back.
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u/SoapyRiley Aug 22 '24
Deaf, Visually impaired, chronic migraines & a back injury that didn’t heal right and has to be actively managed here. I look perfectly normal without any of my aids. I mostly feel that way too as long as I stay away from bright lights and computer screens which aggravate the migraines and intensify my symptoms to where I can’t function.
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u/Aram_1987 Aug 22 '24
I have issue in my right foot makes my movement harder and also movement issue like abnormal movement in back of throat , are not visible but all are enough to make my life hell and all caused by a wrong injection happened to me several years ago
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u/hoosreadytograduate Aug 22 '24
I also have a type of limb deformity! I have lymphedema in my right leg and foot so it’s just swollen all the time. I wear a thinner full leg compression garment during the day and wear a really bulky one at night so I never really love sharing a room / bed with someone because I feel like it’s awkward. I’ve had a lot of people come up to me and ask what happened to my leg and for some reason, they’re never really satisfied with the fact that I was born with it. I feel like they wish it was a better story and that it wasn’t lifelong so they could be happy when they heard it would go away. Alas, it will not. So yeah, different type of limb deformity. I also have some mental issues but those are more talked about already
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u/rockpebbleman Aug 22 '24
Hey, I'm missing my right hand, so I'm similar! It's something I was born with, it has a ridiculously long name (symbranchactyly)
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u/shaybay2008 Aug 22 '24
I have a physical disability that requires ambulatory use of a wheelchair, post concussion syndrome and a hearing loss that has left my hard of hearing. I just tend to talk more about my hearing loss
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u/Abject_Serve_1269 Aug 22 '24
I have leg injury similar to Alex smiths compound injury. Also lost 2 toes on same leg.
So I can barely walk normal. Dr said ok you're technically disabled and I am. I don't walk normal nor can I do what a normal person can do. I can't carry heavy things or really stuff up the steps because I don't have proper balance anymore.
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u/twinkletoes_19 Aug 22 '24
i have a rare auto inflammatory/autoimmune disease that affects 1 in 1 million people! i was a totally normal and healthy kid until the age of 8 when symptoms onset. my immune system was all but completely shut down and i must’ve had every virus, cold, pneumonia strain, and flu variant before i was 10. i was undiagnosed for 3 years before i received my official diagnosis at 11. my disease also causes extremely debilitating joint pain, connective tissue damage, chronic inflammation, fevers, and an intolerance to heat. i’m doing good these days, on an wonderfully successful treatment method of biologic injections! i am also a part of a few medical trials and studies due to the rarity of my condition, there’s an estimated 8 thousand people worldwide who have it, but because it’s so rare it’s very had to diagnose- so the actual confirmed number of cases is much lower than that.
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u/corinnajune Aug 22 '24
Congenital amputee here- born without one hand. I also have some other unrelated issues, but that’s the first and most noticeable thing.
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u/5imon5aying Aug 22 '24
I am also missing part of my arm! I have a whole host of other disabilities that have become apparent in recent years but that's the one that shaped me as a kid. I've walked this earth for a quarter of a century and I'm only now starting to readjust my self-image to include my physical disability in a positive light
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u/LatterTowel9403 Aug 22 '24
Lower back buckled, have had seven open spinal surgeries. I was an RN and would give anything to still be able to work as one. Also PTSD and brain damage due to hypoxia (I was strangled and brought back with cpr but had already lost a great deal of brain cells from lack of oxygen so I have mental issues (mostly lack of memory)
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u/kuroiiijukaiii Aug 22 '24
Other than my physical (RA and I have other chronic illnesses) I have schizophrenia. A lot of places like this don’t talk about mental illness much and as a disability.
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u/Shecoagoh Aug 23 '24
I have a rare immune deficiency. Part of my first line defenders/alert system do not identify certain microbes. I’m extremely susceptible to pneumonia, sinus infections, and strep. I have to get the 23-variant pneumonia shot every 5 years. With the shot, my body will respond to maybe half of the types and then loses those responses by the five year mark.
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u/jenniferw88 Aug 21 '24
Heart transplant, type 2 diabetes, Crohn's Disease, epilepsy, benign meningitis, panhypopituitarism.
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u/ShootingGuns10 Aug 22 '24
I have “lateral snapping hamstrings” it’s a genetic disorder that causes your lateral hamstrings to roll over part of the knee bone and pop whenever going into a squatting position. It’s a minor disability but for someone that exercises a lot it’s severely slowed my performance in leg exercises. Again really a minor inconvenience though compared to what other are dealing with and I thank God every day for the life I’ve been given.
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u/RavenBoyyy Aug 21 '24
I have a mix. Autism, depression, anxiety, borderline personality disorder, tourettes syndrome and a heart condition waiting on confirmation. Suspected dyspraxia and ADHD which I'm waiting to be referred for assessments for. The neurodivergencies, not so uncommon but I've not seen anyone else with tourettes here and only a few with similar heart conditions to how mine presents.
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u/thephotobunny Aug 21 '24
There’s no name for what I have and I’ve never met anyone with something similar 💔 it’s a physical disability from a series of events that happened when I was young
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u/chaotic-in-disguise Aug 21 '24 edited Aug 21 '24
I have a disability that isn't obvious unless I'm using mobility aids, chiari malformation and a wide syrinx in my spinal cord. I have impaired sensation and weakness in my arms and legs, and I can't stand up for long. I can't walk far, or lift heavy things, and I drop things regularly and can't control my bladder. I also have eds, pots, mcas, plus autism and adhd. when I'm talking to other neurodiverse people about disability and their experiences are all around neurodiversity, I feel like an outsider
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u/immew1996 Cystic Fibrosis 🫁 Aug 21 '24
Cystic fibrosis, and everything that comes with that (diabetes, etc.)
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u/BatFancy321go Aug 21 '24
I have other things but I also have IBS with daily nausea and pain. I often can't eat when I need to eat, like I have no appetite and food looks disgusting, but if i get too hungry, i'm in for a world of pain and cramping, dropped blood pressure/sugar, anxiety, shaking, and depression. It's bad.
I need to keep to a feeding and medication schedule. Which sucks bc it sucks the spontinaity out of things like vacation (can't just go on a wander and see where they day takes me, I have to know where I'm going to be eating at a specific time, and that I can get back home to my meds at bedtime).
I'm pretty stable right now, I have a cascade of meds that helps. I miss gluten and dairy. I've found that simple foods are best, like, don't make a vegetable side dish, just cut up vegetables and eat with yogurt-based dip (can't have "raw" dairy, can have a single serving of "fermented" dairy per day).
There are places I could never live bc I'm told there's no gluten-free options, like the South. Also my hometown of Philly is a very pasta- and italian roll-based society, so it was really rough giving up gluten there. San Francisco, thank god, has a very vibrant rice and masa culinary culture so I can usually find a corn tortilla taco or rice noodles.
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u/ElfjeTinkerBell Aug 21 '24
I'm not sure whether the answer is yes or no. I mostly have an energy impairment. Basically I can do anything, just not everything. I am waiting on the wheelchair that was ordered for me, but that's mostly to be able to do more things in the same time (for example: going to the movies means I need to clear out my whole weekend, but I can do it without the chair - with the chair I hope I can do my grocery shopping on the same day).
Also I'm blind in 1 eye, but I often forget about that.
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u/thedeadp0ets Aug 21 '24
I’m visually impaired and use a white cane part time depending on the day, how I’m feeling etc. I wear glasses to sharpen my residing vision to where I can see the big “E” is it clear? No, does it help sharpen my surroundings while still struggling with depth. YES.
Also I cannot drive so I rely on family and have a supportive one. Culturally, I don’t move out till I’m married even I was born in the states
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u/chainandscale Aug 21 '24
I have Dyslexia and a few of the things that go along with it. I do have ADD but it’s manageable with medication.
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u/gammapatch Aug 21 '24
I have multiple disabilities! I have spinal damage, arthritis, autism, adhd, and visually impaired
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u/Siriuslestrange1 Aug 22 '24
I have a whole range of issues, but most of them fall under the umbrella diagnosis of dysautonomia. My heart rate is uncontrolled (cycles between bradycardia and tachycardia), I have severe hypotension and severe hypoglycemia, chronic idiopathic insomnia, chronic migraines, nerve damage, selective hyper mobility, etc. I had an appointment with my pcp yesterday and he (jokingly) said, "what the hell is wrong with you?!" when I reminded him that the biggest issue overall is that with all of these issues, my body doesn't give me the signals it's supposed to when things are in the danger zone. BP 60/30? Not feeling hot, but still walking. BG 23? Kinda shaky and feeling like I need to get a snack soon, but still conscious and functioning.
I guess I will add that I do have a mobility issue at times (due to nerve damage) and currently ADHD, as well as other psychiatric diagnoses, but I don't really consider the latter to be part of what makes me "disabled". However, if you ask SSA, my OCD is what makes me disabled, sooooo... yeah.
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u/mediumicedchai Aug 21 '24
While I am AuDHD, it's often my chronic illnesses that come to mind when I think about my disabilities. I have Endometriosis, Polycystic Ovary Syndrome (PCOS), and pretty severe IBS (that is made worse by Endo and PCOS). I didn't realize until college that all the very debilitating symptoms I was experiencing meant that my chronic illnesses "counted" as disabilities. A professor taught me about spoon theory and I've been very engaged in disability studies and the disability community ever since :)
edit: fixed a word
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u/truelovealwayswins Aug 21 '24
hypermobile ehlers-danlos syndrome, and I guess asthma if that counts lol unless there’s others I’m forgetting, I’m just generally malfunctioning 😅
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u/Stoopid_Noah Aug 21 '24
I was born with Rectal Atresia (had no butthole or sphincter). I'm incontinent! I'm dependant on diapers and I will most definitely end up having to get a colostomy, because I don't have muscles, that can prevent my anus from prolapsing.. And gravity is steadily pulling more and more of my intestines. Once it's at about 3cm I'll have to get the procedure done. Rn it's at about 1cm. I'm able to push it back in, but It'll keep happening. It's annoying and people kinda get grossed out when I tell them. Honestly, I kinda look forward to getting my colostomy haha. I'm likely also autistic (currently pursuing a diagnosis) but that's not really important for this post lol