Why I Got Tested for Huntington’s at 22 Years Old

As you may have read in a previous column, I decided to get tested for Huntington’s at 22 years old.

For me, it was a no-brainer. I wanted to get tested because I can’t handle unknowns. They vex me. I have obsessive-compulsive disorder, so my brain holds onto things it doesn’t have an answer to and constantly reminds me of them. That is what happened with Huntington’s. Every day, my status was at least a passing question: Did I have the gene?

The answer, until last fall, would have provided additional information about my mother’s status as a Huntington’s carrier. I chose not to be tested because I didn’t want to make that decision for her. But the question of my status, and what it would mean for my future, weighed on me. However, this past spring, my mother’s status was no longer holding me back, and I decided to get tested. 

From the moment I scheduled my appointment, I was challenged by friends, family, and even medical professionals to defend my decision. People didn’t seem to understand why someone my age would want to know this information. In their mind, ignorance of my status as a carrier was the same thing as not having Huntington’s, and receiving the results would bring the disease into existence. But that simply wasn’t the case.

Many people were worried about how the news would affect me and wondered if it was the best time to get tested. Granted, I did have a lot going on in my life at the time, including finishing my degree, moving, and starting a new job. However, I knew that Huntington’s would be on my mind throughout the entire process, whether it was dealing with the results or obsessing about the chances.

Most people did not think my need to know outweighed the perceived consequences of the test. I had to come up with various, logical reasons as to why I wanted to know. For example, by knowing my status as a carrier, I could have a better sense of what kind of money to save and in what type of account. But that was by no means my main reason. Ultimately, not knowing would always be worse than knowing. If I knew one way or another, at least I would be able to go a day without thinking about Huntington’s.

I got the results that I have the gene in April, but I don’t regret my decision to be tested. The decision is a very personal one. I am glad I didn’t let other people’s opinions influence my own.

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