Navigating Survivor’s Guilt After Testing Negative for Huntington’s

Deciding whether to undergo genetic testing for Huntington’s disease (HD) is a personal choice.

As Ana Pena reports in a 2019 article for Huntington’s Disease News, researchers have found that “as many as 90% of individuals who have a parent with Huntington’s choose not to take a gene test.” The main reason for not testing is the lack of actionable steps that can be taken, since no medications have been approved to stop, slow, or reverse Huntington’s symptoms.

Times are changing, though. There’s now a pipeline of clinical trials, some of which are available to those at the beginning of their HD journey. It could be argued that participating in a trial is a way for people to take action if they test gene-positive.

I believe everyone who undergoes genetic testing for HD hopes for a negative result. Some say that testing gene-negative was the best news they’ve ever received. This was true for me when I underwent testing in 2010 and learned that the number of CAG repeats on my HTT gene is low enough that I’m not at risk for developing HD.

However, a negative result can still take time to process and give rise to emotions that many people aren’t prepared for.

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For HD Families, Survivor’s Guilt Is a Heavy Burden

Survivor’s guilt

In my experience, this is the most prominent negative emotion we experience. While we’ve “survived” HD, others we know and love won’t. We may question why we tested negative and our family members tested positive, but there’s no easy answer. This can be a contentious issue, especially among siblings who get different results.

When my only sister underwent genetic testing two years after I did, I was more nervous about her test result than my own. I still remember standing outside of a health club in Chicago when she called. My relief at hearing that she, too, tested negative was probably similar to the high caused by taking the strongest drugs in the world. I went into the gym and ran a sub-5:30 mile on the track before I collapsed with joy. I don’t know how my heart and brain would have handled the guilt if my sister had been positive for Huntington’s.

Although I don’t have any other biological siblings, I do have many friends in the HD community whom I consider my brothers and sisters, and many of them are gene-positive or at risk. This eats at me daily, but it also motivates me to do what I can to support them and create resources for the community.

Managing expectations

I went into the testing process hoping for a negative result but expecting to be gene-positive. Therefore, I wasn’t preparing for my future or finding a path forward as a professional, husband, father, and contributor to society. Once I got my negative result, I felt a lot of pressure to make the most of my life.

Huntington’s aside, life can be pretty darn difficult at times. Just because I tested negative for HD didn’t make getting a job, having a career, finding a partner, building a family, or pursuing my dreams any easier. More than 10 years after testing negative, I still ask myself daily, “Is your life as full as it should be?” and “Are you doing everything you can to help those who are gene-positive?”

Even though HD won’t affect my future the same way it will for others, I can’t imagine a day when I’m not trying to find solutions for this community. Many of my HD advocacy efforts over the years — such as co-creating the Huntington’s Disease Youth Organization (HDYO) and HD Genetics or advocating for a patient listening session with the U.S. Food and Drug Administration — are my ways of coping with my survivor’s guilt.

For that, I’m thankful for the guilt I’ve experienced. I hope to redirect my high expectations toward making positive changes in the lives of those with HD.

HDYO recently connected me with a few young people who tested negative and are trying to process their results. I’m not an expert in this field, but I’m always happy to be a sounding board and share my personal opinions with others. If I can ever support those dealing with a negative result (or anyone in the HD community), don’t hesitate to reach out in the comments below or via email: [email protected].

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, and are intended to spark discussion about issues pertaining to Huntington’s disease.