Writing Down My Fears About Huntington’s Makes Them Worse

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by Alexus Jones |

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I learned about my mother’s Huntington’s diagnosis and my own risk during my senior year of college. I was devastated by the news, which exacerbated my anxiety.

At the time, I had a therapist who told me to write down all of my fears and anxieties as a way to combat them. The theory behind this is that if you write the words down, they lose their power. I didn’t have as many coping mechanisms as I do now, and I was willing to try anything. So, I tried it. 

I probably couldn’t have done anything worse than writing everything down and having it in my face. I wrote the list before I received my diagnosis, and the first part looked a bit like this: 

  1. I’m stressed that there will not be a cure for my mother by the time she needs it.
  2. I’m worried that I’m going to be gene-positive.
  3. If I am gene-positive, how will that make my mother feel?
  4. I’m worried that I will be terrible at the job I start in July.
  5. I’m stressed about figuring out who I’m going to live with next year.

Although writing everything down was supposed to make me feel better, it didn’t. Looking at the list, I just felt overwhelmed.

Somehow, writing it all down reminded me how little control I had over so many of my fears. When it comes to Huntington’s disease, that’s just a reality. Since there is no cure, and the risk is based on the number of CAG repeats, which refers to a type of repeated DNA sequence, on the Huntington’s gene, not much can be done. 

That’s not to say that this technique isn’t helpful to others. My mom finds it beneficial to speak her fears out loud, because for her, they do lose their power that way. Plus, if a therapist recommends the technique, it has to work for someone, as Insider’s Sara Fielding noted. But it doesn’t work for me. 

My main coping skill when I am anxious is pure distraction. This is especially helpful when I need to be functional. There is a balance, though. I still have to deal with all of the items that make me stressed at some point, meaning I can’t just put them into a box forever. That is why I put in all the work I did to find a therapist. Maybe I can’t do anything about Huntington’s, but she can help me figure out a way to handle that fact.

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