Why I’m Choosing Not To Get Tested For Huntington’s Disease


It wasn’t until my 29th birthday combined with my engagement that I was really forced to start question my decision to not get tested. The freedom of my 20s was coming to an end in more ways than one. I was setting up a life alongside a partner who would rather know if I was positive or not. It was time to reexamine the decision I made at 16-years-old. 

So I called the genetic counselor in my local area. I wasn’t looking to get started on the testing process, I was just looking for resources and answers. I thought a counselor might help guide my fiancé and me through a conversation surrounding my at-risk status. I referred to it as our own HD Pre-Cana. But when I finally got in touch with the counselor, she started asking me questions about my family history, my health insurance, and explained what the testing process would look like.

I took the call on a walk home from the subway expecting it to be short and sweet. Instead the 20-minute conversation sent me into a spiral filled with tears and self-loathing that I kept to myself for a few weeks. When I finally came out of it, I told my fiancé that I wasn’t ready to get tested. If I couldn’t handle a quick phone call explaining the process, I knew I couldn’t handle the actual process itself. The phone call was the most concrete thing I had done with my impending diagnosis ever. It was also the worst I felt about my impending diagnosis since I found out I was at-risk. 

In reality, does this mean I’m just too scared to get tested? Maybe! And I’m fine with that, but I also don’t want to let fear dictate my decisions. So I took a long hard look at how my at-risk diagnosis was affecting my life and I was genuinely really happy with what I saw. 

I was living my life like I had HD, but that wasn’t necessarily a bad thing. I wasn’t being destructive or pushing people away. Instead I was working hard at a craft I enjoyed. I had created meaningful relationships with people who enriched my life and supported me. And I continued to learn and grow as a person with lots of interests, hobbies, and time to self-reflect. 

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