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

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.


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

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  1. Anna says:

    I recently tested positive for HD and I couldn’t agree more with everything in this article, even down to thinking about bank accounts and pensions. I put off being tested for a while, even though I wanted to, just because I knew my Mum would be angry about it and question my decision. I ended up getting tested without telling any of my family and I don’t regret doing so, even after my result. I was however surprised at how the news affected me. I barely think about it for the most part, but it has definitely changed the way I think about things, most notably relationships. I find myself despairing, thinking I could never be with anyone in a serious relationship because if I cared about them that much,I wouldn’t want to put the pressure on them of them having to care for me when I am no longer able to care for myself. However, I do not regret getting tested against the will of my friends and family. I think you need to be selfish in these circumstances and do whatever you want to do. They’re your genes.

    • Alexus Jones says:

      Hi Anna! It’s sad that it is such a common occurrence for people to project their own fears on this decision. I agree that in this case, you have to do what’s right for you.

      I do want to say that I have been very upfront in all of my relationships about Huntington’s, and it’s not been bad on that end. There is also so much hope with treatments coming out, that soon that won’t be a concern.

      • Stacy says:

        I think the saddest, most difficult to understand, is the medical practitioners reluctance to test here in Arizona. My ex had Huntington’s, his brother also, a few cousins (who have also passed on from it or related illnesses), and likely a few more siblings that refused to be tested. Yet in this state of AZ you have to go to a psyche doctor, they have the ultimate say as to if you can be tested.

  2. Brenda Pierce Steel says:

    Prayers daily
    For people with Huntington’s and their family. When it hits home it is on your mind everyday. Hope for a cure is also my prayer

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