I love being disabled and I sometimes hate my disease

Being disabled is something I often celebrate. But here’s something I don’t say a lot: I really hate some of things muscular dystrophy does to me. Muscle cramps suck. Getting exhausted after moving 3 things off your desk is unendingly frustrating. Feeling like something should be SO easy but your body saying otherwise can be crushing.

But none of that negates the fact that I love who I am. I love being a disabled woman. 

People hear that sentence and think that means I must love all my symptoms or even my disease itself – that’s not the case. Being disabled is complicated, and coming to terms with your body and life because of it is even more so. Every single day means being bombarded with negativity surrounding your existence. On social media, in person, in politics and advertising. It’s a constant stream that tries to drown you. And for a long time I bought right into it because I was hurting – like physically hurting because muscular dystrophy likes to kick you while you’re down sometimes. 

I’ve had a rough start to 2020. My mom got sick and we missed out on a bunch of things we had planned, including my brothers birthday celebration. My disability means that I have little to no independence. I can’t drive and there’s no affordable service to drive me either. My social life is directly tied to somebody else. If my mom isn’t available to drive me – I don’t go. And when you’re in your late 20s, that can be hard to reconcile. 

Sometimes my body hurts. It aches and throbs and pinches. There are days that my arms feel like useless weights at my side, dragging me down with no purpose other than to make everything difficult. My back curves, giving me a permanent round belly that sometimes makes me wince at my own reflection. My legs swell and turn purple. Most days I feel fine, but the days I don’t can be miserable.

I was going to write something justifying all of those comments. Something to paint them as anything other than complaints. But that’s what they are. Because I’m a human being with feelings and struggles and frustrations of my own. It’s just that I learned as a kid that saying anything about my disability that isn’t chipper and sunshiney, people get uncomfortable. A lot of people think being disabled is the worst possible thing that can happen to a person. If you say anything that even sounds sad, it’s taken as a confirmation for their ableism. 

So sometimes I get afraid to complain about anything related to my disability because it feels like I’m handing over ammunition for people to use against me.

There’s someone out there waiting to throw it back in my face for their ‘gotcha!’ moment. But I love being a disabled woman, even when it does hurt. Even when it’s frustrating and scary. At the end of the day I want equality more than I’ve ever wanted a cure.

It’s wrong to paint disability as 100% good or 100% bad. Being upset and tired after a bad day doesn’t mean I wish I was born in a different body, it just means I had a bad day. And loving the fact that I was born exactly as I am doesn’t mean everything about my life or existence is perfect. It comes with its own set of problems, just like yours and everyone else’s. I have to be able to openly talk about them without feeling like we have to simultaneously defend our existence. 

It’s going to sound harsh, but I’m really tired of trying to throw a happy filter on every single aspect of my life just to keep people from saying I’m better off dead.

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