There is no break from disability

As an advocate for rare disease and disability, I obviously spend a lot of time talking about my disease. A LOT. I love being an advocate and sharing the good, bad, and ugly about my disease. I really do. But it can be hard to spend so much extra time talking about something that I already have to deal with every minute of everyday.

Think of it this way. Let's say you have drama going on at work with your boss. Dealing with it is really affecting your work days. So much that it makes you not even want to work there anymore. But you get to go home at 5 everyday. You get to go home, binge your favorite TV show, and focus on something else until you go back to work the next morning. You get a break. Having a disability is like that. Except I don't get a break.

I can stop talking about my disability and drown myself in something else. I can strip all the advocacy parts away and just be. Except the disability part is still there. The pressure to make myself fit in and speak up never goes away. I can pretend to be "normal" all I want but I still need someone to help me put back together my wheelchair after riding in a car. Or someone to carry me down the stairs when the elevator is broken. Or someone to get the paper towels off the top shelf at the grocery store. I don't ever get a break from being disabled.

It's a lot like grief, in that being disabled follows me everywhere. But it's not like grief in that I constantly have to explain myself. Why is your foot spasming under the desk? Why are you a young person parking in the accessible spot? Why can't you walk? Why do your hands shake when handing your credit card to the cashier? People ask these questions to me every single day and expect an answer. Even when no one verbally says anything, the stares still remind me "Oh, I'm disabled."

I can't ever escape my disability and frankly, it's exhausting. Yes, I am introverted, but sometimes I stay home all day just to escape people's judgements (positive or negative) about my disability and to avoid needing help from anyone. It's easier to live with my disability sometimes if I am the only one I have to explain myself to. Sometimes I have those days where I'm not "feeling FA". Those are the days where I do anything I can to feel "normal," even if that means staying home all day.

I didn't write this blog post to say that I don't want to talk about my disability ever again. I wrote this to say that I get tired of my disability sometimes. I don't always jump at the opportunity to talk about it. Sometimes I would rather pretend it doesn't exist, to the best of my ability anyway. For anyone disabled reading this, you have a right to be exhausted. Living with a disability is exhausting. Feeling like you have to constantly explain yourself is exhausting. You're not alone.