I’m skeptical about the idea that people can appropriate disabled experiences in the same way they can culture
Like…if you experience something that is similar to my experiences, and that is similarly debilitating
I don’t care if you…
I have a similar experience to bittersnrr because the two rarest diseases I have (eosinophilic esophagitis and reflex neurovascular dystrophy) are also pediatric conditions which are relatively new.
The online support groups for EoE are all parents exchanging advice, and there simply are none for RND. On tumblr I’ve found one other person with EoE, and one other who has RND.
Comparing this to my other rare disorder, EDS, since it is about as rare, there’s just more awareness. And it’s not primarily pediatric.
So far I’ve coped by:
1) Finding groups with similar problems, for example, people with gastroparesis have similar experiences to us with EoE, and with the way my RND presents (I have fibro plus EDS so taming it via intense exercising is a no-go, and not for lack of trying) it’s very similar to general neuropathy, just intermittent and less responsive to non-opioid meds.
2) Spending time hanging out in general chronic pain and EDS communities, which helps me feel less alone.