my-person-suit-is-defective

[my-person-suit-is-defective]

We were thinking of making a shoutout post for people with less talked about physical disorders on tumblr (like AMPS, scoliosis, vEDS, etc.) and we just do not have the mental energy to do a search for these things because (sparkle) Pain brain (sparkle) so, reblog this post with rarer physical disabilities that you feel need to be talked more about on tumblr and we'll make the post!

[my-person-suit-is-defective]

unpopular opinion but mobility aids shouldn't cost so much !!

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Truth

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Something I want able bodied people to understand is that I don't wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

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Does anyone have any supportive shoe recs?

My feet are agony at the moment, any pressure on the bottom of my foot is painful and I can barely walk or stand. I think the pain is probably plantar fasciitis maybe? But I also have flat feet and was told as a kid to wear there insoles which never fit in any shoes ever.

The majority of other med students and a lot of med staff wear sketchers and similar things but they seem very cushiony and not very supportive?? But I'm loosing the will to live trying to research this shit

#sort of feels like im walking on exposed bone or smth tbh #not comfy #i detest shoe shopping #i wanna go and try stuff on but im anxious #also v poor #also in FUCKJMG AGONY TRYIGN TO WALK #genuinely so constantly painful #even at rest now #dont think ive ever wanted a wheelchair so bad in my life #chronic illness #ehlers danlos syndrome #chronic pain #disability #medical student #shoes #advice and recommendations please

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Finally got my official hEDS diagnosis!

I have A Lot of feelings about it and I'm not going to lie, 95% of them are negative, but I am really hoping that this will at least make my access to other necessary specialists at least a little easier

#ehlers danlos syndrome #chronic pain #chronically ill #disability #chronic illness #spoonie #new diagnosis #newly diagnosed #ahahah only took me 5 years to get an appointment to see this fucking specialist #so angry for so many reasons #not the diagosis tho #very happy about that

[my-person-suit-is-defective]

I love when you reach the point in a conversation with a new specialist where they ask "so other than x reason you are coming to me, you're healthy?" I always want to burst out laughing because if I had a penny for everytime a doctor asked me that, I would have a whole dollar. But, instead, I start listing my various chronic illnesses and watch their expression get increasingly disappointed. It's so funny.

[my-person-suit-is-defective]

Holy shit.

Researchers at the University of Chicago have been able to create an ‘inverse vaccine’ that can remove the immune systems memory of specific molecules.

Reading that, sounds like a horrendous bio weapon in the making. But the plan is for it to be used to treat autoimmune diseases like multiple sclerosis, type one diabetes and rheumatoid arthritis.

This was already proven to be able to prevent autoimmunity but the new work shows it can be used to treat ongoing autoimmune issues.

Source.

[my-person-suit-is-defective]

honestly fucking fascinating that people will pretty universally understand that thin people can be naturally predisposed to thinness regardless of what they eat or their activity level, but that so many of the same people cannot possibly fathom that fat people could have similar dispositions or that there could be any factors more complex than a "lack of self control."

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There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

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Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[my-person-suit-is-defective]

My nemesis: sweaty armpit stains on shirts 😤

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A popular article in the ME/CFS community that's in the Guardian today

#the impact and trauma of the GET i got as a teen will probably affect me forever #i cannot and will not stop talking about how traumatic it was #they would literally gaslight you into believing that you were the problem #that there is no physical pain #so you need to push through and do better otherwise you were making yourself worse #and there was no damage being done to your body #i was running on subluxated joints #until the physio was like running isnt meant to hurt like that #a year after starting #the damage done to my body and to my mental processing and wellbeing is something i will never be able to fully recover from #bc i was a misdiagnosed 14 year old #and the fear i still feel at even contemplating accessing support services and medical care has severely limited me

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Academia is the pinnacle of performative activism. All my profs (who are in the gender studies department fyi) have us read all this disability theory and have sections in their syllabi about accessibility and ableism in academic spaces. But when I’m like hi I’m severely disabled can I get an extension/an additional excused absence/other reasonable accommodation they’re like no welcome to the real world sweaty where there aren’t handouts.

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anyway here's to disabled people who are not healing. disabled people who are not recovering, ever. people with disabilities that only get worse and worse over time. people who cannot access treatment for their disabilities or whose disabilities simply aren't treatable. people who know they'll only get more and more disabled as time goes on. people who know their disability will kill them sooner or later. you are seen, you are important, you are not dead weight, and you deserve support.

[my-person-suit-is-defective]

Friendly reminder that the reason you feel so much better is because of your meds, don’t stop taking them unless you talk to your doctor first, you really do need them, I promise.