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I'm Getting Tired of Talking About My Disability

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In my experience, movement disorders are tiring, frustrating things to deal with daily. No matter what form it takes: jerking movements, unusual facial expressions, muscle contractions, whatever it is, it’s hard. It really is hard. It hurts, emotionally and sometimes physically. It can be embarrassing, and it can really test your mental health.

I’ve battled movement disorders for almost two years now. It isn’t new to me as a condition, but recently, it is progressing and getting worse, which is unusual for the disorder I have. It has my doctors worried, and so we are working together to find some answers. But this isn’t my main problem right now.

My tics have always been in my eyes, and those are pretty visible. I’d gotten used to them and people around me knew about them. I had accepted them as reality and was moving on with life. But over the past month or two, another tic has developed. But this time, it’s actually a slightly different disorder than my first one. My eyes are technically a dyskinesia, which is involuntary muscle movement. My new tics are in my arms, pulling, jerking, twisting, flapping and swinging around. That is much more obvious, and in fact, it’s even becoming disabling to a certain degree. That is a dystonia, which is involuntary muscle contractions. My muscles randomly pull and tighten, causing movements based solely on muscles’ “flexes.”

I was never embarrassed by my dyskinesia, my eyes. I was proud to be vocal about it, and even though I encountered some difficulties with it, I overcame everything and had processed it. But these new problems in my arms, those are a lot. These physically hurt, they get in the way of my work and life, and they are, for the first time, embarrassing,

I’m not easily embarrassed by anything. But this? This embarrasses me. It’s a real struggle, and one healthy way to deal with issues is to talk about them. Talking about them with a therapist, a friend, a family member, anybody willing to listen, can really help alleviate some stress or anxiety about any kind of challenge. But just as I’m tired of having the movement disorders, I’m also growing tired of having to vent to people about them.

Even writing this article is a mental and emotional struggle. I don’t want to have to vent about my movement disorders, because I don’t want to have them in the first place. It’s exhausting to deal with them. The more issues that arise, the more I want to talk about them. But I’ve grown so weary of talking about these things that I just can’t anymore.

I can’t vent anymore. I’ve drained all of my concerns out, and yet the emotional and mental pain of these tics is still there. I don’t have anything else to say, and so much pain I can’t get rid of. There is also an element of “am I starting to bother those around me?” When I started talking to people about my arm tics, they reminded me that they would always be there for me and would always listen to me. I know that’s true. But eventually, I have to start sounding like a broken record, right?

So, what’s the point of all of this? Why did I just write a whole article about how I’m tired of talking about my problems? Because that’s OK. Many people have a lot of challenges and struggles in life, and we often want to talk about them. But at a certain point, it’s exhausting to deal with the issues and talk about them. As much as we may want to vent, sometimes we just don’t have the energy anymore for it. And that can be frustrating. But just like it’s OK to talk about our problems, it’s also OK to say, “you know what, I’m too tired to talk right now.”

We’ve all had challenges and struggles that have tired us out. For those with chronic health conditions, that “tiring out” is a daily struggle. It’s cliche, but it’s true: life isn’t a sprint, it’s a marathon. Don’t feel like you always need to be all right and that you need to deal with your challenges quickly. After everything you’ve been through, you deserve some rest. Life has been hard for you and me. We’re tired. So rest, recharge, and be ready to say, “I’m tired now. But I’m still fighting for a better life.” You deserve a better life, but you can’t achieve it if you’re tired.

Getty photo by AJR Images.

Originally published: December 21, 2020
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