30 Things about Dystonia You May Not Know

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(This post was originally published last year for Invisible Illness Week 2013.  I’ve made a few updates and am republishing for the 2014 Invisible Illness campaign. Please visit Invisible Illness Week for more information about this wonderful advocacy effort.)

1. The illness I live with is: Cervical Dystonia

2. I was diagnosed with it in the year: 2010

3. But I had slight symptoms since 2010

4. The biggest adjustment I’ve had to make is: to cut back on driving

5. Most people assume: I am strong

6. The hardest part about mornings are: getting out of bed

7. My favorite medical TV show is: haven’t watched medical shows in a long time

8. A gadget I couldn’t live without is: Do I have to choose? Love Apple products and my Cuisinart

9. The hardest part about nights are: insomnia, but I had that before I had dystonia

10. Each day I take: fermented cod liver oil. Muscle relaxers a few times a week

11. Regarding alternative treatments: I get Xeomin injections every 3 months to be able to help keep my head straight. I use essential oils to help with pain relief. Lots of yoga and exercise

12. If I had to choose between an invisible illness or a visible I would choose: Don’t know.

13. Regarding working and career: probably unemployable in the corporate world now. I’m working on developing my writing and becoming a virtual assistant in the future.

14. People would be surprised to know: Anxiety is a big part of this disorder

15. The hardest thing to accept about my new reality has been: my dependence on other people

16. Something I never thought I could do with the illness that I did was: Tree Pose

17. The commercials about my illness: There aren’t any!

18. Something I really miss doing since I was diagnosed is: Jumping in the car with my kids and taking them anywhere

19. It was really hard to have to give up: see 18.

20. A new hobby I have taken up since my diagnosis is: yoga

21. If I could have one day of feeling normal again I would: take my kids to the beach by myself

22. My illness has taught me: God is in control

23. Want to know a secret? One thing people say that gets under my skin is “God doesn’t give you more than you can handle.”

24. But I love it when people: ask me what dystonia is, because it is soo misunderstood.

25. My favorite motto, scripture, quote that gets me through tough times is: It’s hard to pick but this is a favorite. 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

26. When someone is diagnosed I’d like to tell them: I’m so sorry. I wouldn’t wish this on anybody. Welcome to the world of an unpredictable disorder, you’ll learn what works best for you as time goes on. Life is still worth living.

27. Something that has surprised me about living with an illness is: Life goes on and time passes.

28. The nicest thing someone did for me..thankful for my family who picks up the slack for me.

29. I’m involved with Invisible Illness because:  For support and advocacy.

30. The fact that you read this list makes me feel: thankful that you took the time to read it!

Additional information and support for dystonia:

Dystonia Medical Research Foundation

ST Dystonia

Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.

Rest Ministries (support for chronic illness and pain)

  • February 27, 2022