How my disability fuels my anxiety
In a lot of ways, my disability feeds my anxiety. When you have a disease that progresses slowly over time, sometimes it kind of feels like you’re waiting for the other shoe to drop. You look at the different ways your body is already being affected – weakness, muscle cramps, etc, and then you wait and wonder what comes next.
I’m the kind of person who likes to know what the plan is. If I don’t know what to expect, my mind will automatically fill in the blank with the worst possible scenario it can come up with. So you can just imagine how this story is coming together, right?
Muscular Dystrophy affects people differently. I can sit up and move around but my brother can’t. My brother can lift his arms above his head and I can’t. These are just small examples, but still. It’s different for everyone. Some people die at a pretty young age. They have complications with their lungs, or get sick and can’t fight it. Others don’t. Some people have to have feeding tubes put in, but not everyone. There’s a mile long list of things that could happen to me, but it’s not like I can go to the doctor and get a definite answer to what will happen when.
On a good day, I don’t really think about it. My disability is my normal, so it’s usually just floating around somewhere in the background. Until I get a weird pain. If my leg cramps up more than usual, I panic about my dislocated hips finally needing surgery. When I get really anxious and I feel my heart pounding, I wonder if I put too much stress on it. If someone sneezes around me, my mind starts racing with the thought of getting the flu and not being able to fight it off.
I genuinely don’t believe that having Muscular Dystrophy is a scary thing. At least, so far it hasn’t been for me. I just happen to have a pretty terrible time with anxiety, and they like to team up against me sometimes.
There’s a lot of things that could happen, and so when I feel something that’s a little off I don’t always know if it’s just a random ache or the start of something. I feel like a lot of disabled people would agree with me that you kind of have to play this weird guessing/waiting game. It’s not worth it to run to the doctor every time you feel a pain. I’d be going way too often for reasons that almost always turn out to be nothing. And even when it is something, there’s almost never anything a doctor could do for it anyway.
So, I just kind of deal with it. I cross my fingers that something isn’t wrong with my foot when it swells more than normal. I’ll just prop it up with pillows and hope that does the trick. Meanwhile, my mind is like ‘hey, what if you get a blood clot and die.’
Not like I have any idea how blood clots work or what symptoms you’d have for a blood clot. Or that my Muscular Dystrophy makes me prone to blood clots. It’s just a random anxious thought that takes over.
There’s a lot that I still don’t know about my disease, and I might be in the minority with the opinion that I don’t really want to. I honestly don’t have that much trust for most of the doctors I’ve been treated by, so I’m in no hurry to go asking for their help unless I desperately need it. For now, I have enough information. I know my body and what it can or can’t do, and I also know that if something changes, I can get whatever new information I need when the time comes.
Should I be more informed? Maybe. But I don’t need to worry about the future any more than I already do.