Hey everyone! I'm happy to be here. I have ME/CFS and recently got in to see a rheumatologist for the first time. Suspected Sjogren's (I have many of the symptoms), but my first tests came back negative. Apparently it takes 8 years, on average, to get a diagnosis. For now, loading up on my eye drops / nasal spray / dry-mouth everything at all times.
Disability and Accessibility
All things disability and accessibility related, and advocacy for making those things better.
See also this community's sister subs Feminism, LGBTQ+, Neurodivergence, and POC.
This community's icon was made by Aaron Schneider, under the CC-BY-NC-SA 4.0 license.
I just want to say, "Hi."
My interest in this community stems from having a stutter, depression, and social anxiety. I also work in web development and am always interested in learning more about web accessibility. For the most part, my conditions don't affect my ability to use the web, so I always feel like there's lots of room to grow there. (Too bad the folks at Reddit don't care much about that. Looking forward to the blackout.)
Hi all! I'm here on behalf of my partner of 26 years, who was dx'd with Alzheimer's (plus a big serving of depression and anxiety). She's been a longterm disability rights advocate (seizures, hard enough of hearing that she signs—or used to, has been socially withdrawing, and memory + Alzheimer's… well, you know). When she got the official dx, I joked to her, "well, you were always proud of being Disabled—now you've got the Great Mother of all disabilities."
Hi everyone! I am a person with mental disorders, Asthma, prediabetes, and the developing of thyroid issues who has been put on disability benefits due to my inability to find and or maintain work. If anyone ever has any questions about Ontario's disability support program, feel free to ask me and I'll try my best to help out. I am not a social worker but I have had to grudgingly read a lot of those horrible, horrible documents and rules relating to ODSP in my experience with them.
By the way, just a reminder to my fellow Canadians that there's supposed to be a federal-wide disability benefit program being introduced one day in the distant future. It's not happening now, but it received "yes" from pretty much everyone and finished it's third reading back in May. I am sadly not as politically knowledgeable as most people, so I don't know "wtf does that even mean", but it's apparently good news! Yeah!
Hi everyone! I'm an autistic person, I have ADHD, along with a couple of other ones I generally don't talk about online for various resons.
Hello. I've been chronically ill for decades, with many symptoms going back to my earliest childhood memories. Dx are fibromyalgia, ME/CFS and FND (functional neurological disorder, which basically means something happens in the brain and then something weird happens in the body, and they're related, we don't know why and aren't much fussed to find out). I also had unDxed endometriosis, possibly for 20 years, as well. Because GPs have been so unhelpful, I've had to teach myself a lot. Nutritional approaches have helped me the most.
Unhelpful doctors - such a classic and very relatable unfortunately. I wish us all more empathetic and competent medical proffesionals.
Hello everyone. I'm a 37(m) with Ehlers-Danlos Syndrome and too many cats.
Is there truly such a thing as too many cats? Hard to believe ;)
When they get tangled in your feet and you fall and end up in the ER it feels like too many.
Oops. Thank you for enlightening me. Now I know. The optimal number of cats is simply less than that :D
I'll comment about myself too. I am neurodivergent in more than one way and have a couple of chronic illnesses, that when separated, would be mostly just a minor annoyance, but when bundled together become a major pain in the ass (both metaphorically and literally).
Hi! I'm a 45 year old amputee. Had an accident in 2015 and after a buttload of surgeries lost my leg. Had a traumatic knee replacement this past December and am in constant pain. Getting a morphine pump soon. I also have a paralyzed neurogenic bladder from my accident. I have an awesome cat and partner.
In a nutshell, a couple of drivers took me out on a bicycle 2/26/14, with a broken neck and back. The bones healed but I have some kind of undiagnosed soft tissue damage that makes it impossible for me to hold posture for more than around one hour. It doesn't matter if I'm sitting or standing. If I push past this, I am a useless zombie. It will also take me somewhere between a few days to a month to be able to sleep for more than an hour or two after pushing myself to stay upright for too long.
Naturally doctors in the US don't have a clue what to do with me and neither does disability court. I am stuck living as a burden to my parents waiting for them to die so that I can take up occupation in a ditch somewhere as is the American way.
"The American Way" sure is horrible. I hope things get better for you, and over there in general. Not like it's that great in my part of Europe, because it is not, but at least I have no big problem with insurance etc.
Hello. I've been having trouble with my sight (basically it gets blurry suddenly and I can't see thing that are at a close or middle distance. At the beginning the "blur" only affected the view of things near me, but it's been getting worse) and to feel my arms and legs, which of course affects my mobility. Apart from being in pain almost constantly
Finally, a year ago I was diagnosed with several issues in my vertebral column, including cyst in my cervical vertebrae, that doctors have told me will never go away.
The issue with my sight seems to be at a muscle level, but my doctor cannot be sure until she can compare two visual field test. I've just had my second one last week (the other was last year when I started to make appointments with her after struggling for years with specialists that told me nothing was wrong and that they were no changes in my visual), so luckily it won't be much time until I get a diagnosis.
To make things worse, I've started to have heart issues and my last ECG (a simple one and holter) came with bad results. But I don't have an appointment with a cardiologist til July.
I also have hyperacusis and bad fine motor skills that I don't know if I was born with or were a product of the epilepsy I had from age 3 to age 14.