This phenomenon makes me SO mad, and it feels SO ableist.

How do you think it feels every time I have to figure out whether it matters that my 10 surgeries don’t fit in the one line you gave me?

Or that my rare genetic conditions don’t fit in that tiny “other” line?

Or checking boxes for symptoms I know you’ll ignore because I deal with chronic illness?

I optimize for large medical systems to minimize paperwork.

#disabilityMastodon #disabilitydon #serviceDesign

https://mstdn.social/@erictopol/110848788295322602

@TheJewberwocky There is actually an instance dedicated to the above. https://disabled.social
There's also a disability group @disability and you can follow hashtags like #disability #disabilitydon

Something that's really frustrating about realizing/being diagnosed with both autism and POTS in the same year is that I have no idea how much of my symptoms are caused by one or the other, or a combo of both.

I know that stress is my main trigger for my digestive symptoms(I also have IBS, because of course I do😅), and that I've definitely been in burnout most of the year, during which I've experienced an uptick in POTS related symptoms.

But now, after having a short period of feeling quite well both mentally and physically, I'm back to having a racing heart, feeling more anxious(especially in evenings?) and having more digestive issues(this also tends to coincide with anxiety in evenings), fatigue, and even body aches.

I've ruled out illness(everyone in the house is fine and it's been days at the same uncomfortable baseline) and ultimately I'm sure that the main cause is stress, but I feel it would be helpful to be able to parse out whether I'm too overstimulated or need more water or salt; if doing some yoga is what my body really needs, or if I actually just need to spend more time in bed/relative solitude. Or is it both/all?

Everything I do feels wrong or not enough. My husband is home from work all this week and I want to spend the time recovering but I don't know what it is I need most.

I know it's a very individual problem, but if anyone with a similar combo has had luck differentiating between autistic burnout and a POTS/IBS flare, I'd love to hear about that. Also, just solidarity.

#AskingAutistics #ActuallyAutistic #AuDHD #AutisticBurnout #LateDiagnosed #POTS #Dysautonomia #IBS #disabled #disabilitydon @actuallyautistic

So if you’re dealing with the combination of chronic depression, targeted executive dysfunction and the crushing weight of your medical backlog - I see you. It sucks. I’m sorry. I’m there with you. You’re not alone. #DisabilityMastodon #Disabilitydon #EDS

So if you’re dealing with the combination of chronic depression, targeted executive dysfunction and the crushing weight of your medical backlog - I see you. It sucks. I’m sorry. I’m there with you. You’re not alone. #DisabilityMastodon #Disabilitydon #EDS

There is much needed energy given to suicide prevention, but when living with chronic disability there is also the monthly/weekly/daily decision to engage in your own care. Every day is a victory. There is SO much friction involved in staying alive for many of us: phone trees, appointment schedulers, arranging rides, waiting rooms, procedures, side effects, tests and monitoring, prescriptions, copays… etc. And it’s mostly things only we can do. #DisabilityMastodon #Disabilitydon #EDS

There is much needed energy given to suicide prevention, but when living with chronic disability there is also the monthly/weekly/daily decision to engage in your own care. Every day is a victory. There is SO much friction involved in staying alive for many of us: phone trees, appointment schedulers, arranging rides, waiting rooms, procedures, side effects, tests and monitoring, prescriptions, copays… etc. And it’s mostly things only we can do. #DisabilityMastodon #Disabilitydon #EDS

Please join us on Saturday, January 28th at 11:00 a.m. for a mental health town hall with guest Amy Stewart, LCSW. All questions must be submitted in advance to covidlonghaulers@gmail.com.

Link: https://facebook.com/covid19longhaulers

All town halls are also available at https://YouTube.com/@covidlonghaulers

#LongCOVID #MentalHealth #Disabilitydon

Please join us on Saturday, January 28th at 11:00 a.m. for a mental health town hall with guest Amy Stewart, LCSW. All questions must be submitted in advance to covidlonghaulers@gmail.com.

Link: https://facebook.com/covid19longhaulers

All town halls are also available at https://YouTube.com/@covidlonghaulers

#LongCOVID #MentalHealth #Disabilitydon

Now that I think the Herschel Walker saga is coming to an end--at least I hope it is, I want to gently remind all of us that casual #ableism is not okay. Making fun of Walker's ideas is perfectly fine. I have been so disappointed in people, journalists, friends, and acquaintances this year because of the lack of understanding of #disability. Herschel Walker is clearly dealing with #CTE. There's just no excuse for the kind of comments I've seen.

#CripTheVote #Disabilitydon #disabilities

On International Day of Persons with #Disabilities, please take it from me, a woman diagnosed with #EhlersDanlosSyndrome in her third decade: just because a condition is incurable doesn’t mean diagnosis is useless. My life has become so much more manageable now that I understand why my body does the things it does, and I am more able to give myself grace and recognize my limits instead of pushing to injury or illness. You deserve clarity. #disability #disabilitydon

From #WaPo
“Many products in this guide are made by disabled people, who are more likely to face job discrimination or work limitations that can restrict their income. And you’ll find gift ideas for people with a variety of different needs and conditions.”
#InclusiveGifts #Disabilitydon #GiftGiving
https://www.washingtonpost.com/wellness/2022/12/01/gift-guide-disability-chronic-illness/

Oh come on! Be a little skeptical, will you? Not only do I knot want a cure like this, but not from a billionaire whose inventions kill people. #Ableism

Neuralink's Brain Chip Plans: Help the Blind See and the Paralyzed Walk - CNET

https://www.cnet.com/science/neuralink-brain-chip-plans-help-the-blind-see-and-the-paralyzed-walk/#ftag=CAD590a51e

#accessibility #disability #DisabledPeople #disabled #Disabilitydon