“What advice do you have for people with POTS who just got diagnosed?” my physical therapist asked me during our last session.
“Find other disabled people,” I replied without hesitation. “On Facebook groups or support groups or wherever they can.”
She thought I meant for advice. And yes, disabled people do have the best advice for someone living with a disability, because we’ve lived it.
“What advice did you find helpful?”
I told her about compression sleeves and avoiding heat and other triggering situations. I didn’t know how to express that disabled people can benefit from finding disabled community.
I reached out online. And there I found a thriving, vibrant community of other disabled people. People who made jokes about painsomnia. People showing me that I was not alone, or a weirdo. That I didn’t have anything to be ashamed about; that I could say the word disabled. People who showed me that my negative experiences with doctors, fat-shaming, and applying for disability benefits were not unusual but the norm: part of a systemic oppression that affected us all. I learned the word “ableism”, and I learned better ways to advocate for myself.
I will not pretend that every disabled person is perfect, or that the disability communities I’ve found myself in have been free of all drama. We’re only human after all. But finding people like me has allowed me to better accept myself and my body’s limitations.
Now I can ask people for advice when I’m trying to find a new cane or facing a new diagnosis. There is a whole community out there with a body of knowledge that other people simply don’t have: what it’s like to live in a disabled body. I have learned so much. It is especially helpful with rare conditions like MCAS (mast cell activation syndrome), because so often even doctors don’t know what will help improve quality of life.
Disability community is where I go to see that I am not alone, that others share my experiences. Disability community is where I go to feel proud of those who have come before me, fought for things like the ADA, and made my life just a little bit easier.