Living with Cervical Dystonia: How do I react to it?

When I was first diagnosed with Cervical Dystonia, I was very confused to say the least. I wanted to know what was happening to me, how it was happening, and why it had started. I wondered how it would affect my life and my future. Would the twitching and the pain get worse? What judgements would people make about me while my neck was going wild? Would it last for the rest of my life? The questions at first were overwhelming and it left me feeling very depressed. Being diagnosed right before a holiday did not help either. Thanksgiving Day was probably one of my biggest low points because of an attack I had before Thanksgiving Dinner. I wanted to be social, to spend time with friends and family, to be a part of a conversation that did not revolve around what was wrong with me. However my neck had different plans for me that day. it decided to start spasming to the left like it loves to do. During the attack I sat in a corner and stared at my phone while trying to ignore the stares or sympathies of those around me. I just wanted to be normal again. That was all.

That attack and other attacks like it initially made me feel very depressed and helpless. I considered quitting my job as a cashier and dropping out of college for a semester to figure things out. But I didn’t. And you know what? I’m glad I didn’t. I’ve had Cervical Dystonia for about three months and my attacks are worse than they were in November but I have refused to let it control my life. I have learned that when faced with a disease or challenge that is out of your control, you may not be able to control that its happening but you can always control how you react to it. Are there still times when I get depressed about my disease? Yes. I would be a liar if I said there wasn’t. Are those times of depression as frequent as when I was first diagnosed? No. Not even close.

I will not let this disease break me down for two reasons. The first being that I want to be happy. It’s as simple as that. The second reason and inarguably the most important, is this disease has given me the opportunity to help others. I hope to connect with others with disorders like mine and hopefully build some type of support system. I hope to raise awareness about this disease and one day hopefully find a cure. I want to be an inspiration for those who are where I was that Thanksgiving. Those who feel depressed, helpless, or alone. This disorder gives me the opportunity to help them. I can’t control when my neck will lock, spasm, or twitch but I can control what I do with my life from here on out. I am choosing to be happy. I am choosing to help others. And I am hoping that others will make that choice with me.

9 responses

  1. You are an inspiration to me and I know your positive attitude will have a real impact on the lives that you are touching and will touch in the future. God bless you.

  2. #respect

  3. Love you, man! Hang in there.

  4. Chris will definitely be keeping you in our prayers that it gets better with time, and you are very brave to do this video and share this difficult time in your young life.

  5. Chris. All I can say is “wow..” Not only is it shockingly wrong for someone as awesome as you to have to deal with something so annoying, but you have a plan for it too!! This is perfect… Really. The website/blog/Facebook! That is exactly what you need to do to get word out. I would love to get together with you for an interview that I don’t know, you could post somewhere so people can watch and hear your thoughts, suggestions and feelings. That could help!!! Let me know 🙂 I love you man, as ridiculous as this sounds?.. You Got This. God let this happen to you for a reason.! Ill be praying for you!!!

    1. Yeah I would love to link up for an interview! Just hmu whenever you’re in Maryland!

  6. Well done! Well written and fabulous attitude. There will always be the darker times, but you seem to have the ability to deal with it all and to help others. We need more people like you!

  7. Well done! Living with any sort of dystonia is hard, but you will become a stronger and better person by keeping the attitude you have taken on xx

  8. Wow, you’re an inspiration. I hope you stay connected on Dystonia friends on fb.
    I have oromandibular dystonia, so it’s affected my speech, but I went 2-3 years without a diagnosis – and about 8 years before I found a neurologist who would do botox. One neurologist told me botox would not work for this type of dystonia, but it does work! I knew nothing about this disease until I was diagnosed with it, after I was 50 years old.
    I hope you continue to view this bump in the road as an opportunity to be an advocate! Good for you – and be sure to reach out if you need encouragement. I’ll be there for you. Perhaps I’ll revive my blog.

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