Okay, if I don’t say something, I might actually scream.
I’m seeing a LOT of discourse online outside of and within the chronic illness/disability community about SSDI and the lived experiences of disabled people. Mostly, I’m seeing a ton of people having to defend themselves against people accusing them of faking it, of not actually treating their diagnoses, of exaggerating, being lazy, the works. The stuff that almost every chronically ill and disabled person deals with. Usually this wouldn’t bother me this bad, but it’s happening en masse. It’s pretty much my entire FYP on both Tik Tok and Instagram. I’m doing my part to try and keep my feeds specifically on awareness, but this is an important part of awareness.
The people out here in these comments are spreading harmful misinformation. They’re undermining our lived experiences. They’re taking the words of dangerous and disproven sources as gospel. And it’s INCREDIBLY frustrating. I know a lot of my conditions and symptoms fall on a more moderate end of severe. I’m really lucky that I’m able to modify my job to allow me to keep working it, but I’m still down for the count every day after and every weekend. If I’m not working, I’m at home recovering.
However, because I don’t experience the severe to very-severe scale as often as other people do, I don’t talk over them. That’s not my place. Who am I to tell someone “well, I can work and we have the same diagnoses, so you’re fine!” Disrespectfully, that’s genuinely such a horrible thing to do to someone. Disabled people have been spoken over and disregarded since the beginning of time. It’s what leads to harmful rhetoric about treatment for ME/CFS, what PEM is and where it comes from, and the origin or “cause” of Autism.
And I know that, realistically, this is going to continue to happen. My post is mostly just to scream into the void of how exhausting it is to spend our lives fighting against misinformation and begging to be heard.
So, just as a reminder for all you chronically ill and disabled baddies out there:
You are allowed to take up space. You are allowed to advocate for yourself and also separate yourself from the toxic spaces online trying to invalidate you. Your lived experiences cannot be erased by someone else’s ignorance. You are valid. You are precious, loved, and worthy.
