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And ended spectacularly badly.


In the middle of yesterday I wound up completely and utterly overwhelmed. I wasn’t feeling great in the morning but I thought it was just physical. But by midday it became just unbearable. And I started crying and could not stop.


To be honest I hate the diagnosis. It may as well say ‘stop taking me seriously, and start telling me about yoga again.’ Because I know that this in particular has a stereotype that is very hard to budge. And in part because the medical establishment pretty much agrees with it. Which is also perhaps why it is underreported in somecommunities. I already deal with it, and have already thought “if it’s this misunderstood with a disease so well defined what is it like with more recently added disorders…”


I’d also recommend reading and following the commentary of actual advocates. I am not. They are best if someone you don’t know, so that you can see the near universal difficulties there are in trying to self advocate.


I highly recommend the following at the very least (not in any real order)


https://twitter.com/SFdirewolf

https://twitter.com/crippledscholar

https://twitter.com/Imani_Barbarin

https://twitter.com/MortuaryReport

https://twitter.com/dominickevans

https://twitter.com/DisVisibility

https://twitter.com/VilissaThompson


I follow all of them. I quite deliberately also follow disabled people who do not have the same disability as me, nor other shared identities. So I can keep myself in check too.

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