What’s next after testing negative for Huntington’s disease?
The genetic testing process can be emotional — even if you get the desired result
I’ve recently seen some posts in Facebook groups and Reddit threads about the emotional toll of testing negative for Huntington’s disease (HD). Some share that they no longer feel a part of the HD community. Others say they’re exhausted after running so fast and for so long from this devil disease, only to realize they were never actually being chased. Some folks are contemplating how to process all of the time, emotions, and anxiousness that were involved in not knowing. Did they waste years of their life?
Anyone undergoing genetic testing for HD of course wants a negative result, but this comes with its own healing process. I tested negative almost 15 years ago, with an intermediate allele of 31 CAG repeats, and I still struggle with an emotional imbalance. I immediately felt relief after receiving my results, but then I began feeling like an impostor in the community — a place where I had found friendship and a sense of purpose. Was I an outsider now that I knew I wasn’t at risk of developing HD symptoms?
Taking action
To give people less reason to kick me out of the community, I immediately reached out to the team at PREVENT-HD (formerly PREDICT-HD) to inquire about participating in an observational trial. I felt I had to show the community I wasn’t going anywhere. I signed up for the study before I even told my family and friends my good genetic news.
Over the years, my guilt motivated me to serve and support the HD community. I helped establish the Huntington’s Disease Youth Organization and founded HD Genetics, a privately funded startup that offers remote genetic testing and counseling. I’ve also worked to accelerate research by hosting a patient listening session with the U.S. Food and Drug Administration and writing this column for Huntington’s Disease News.
One thing I’ve learned is that nobody will kick you out of the HD community for testing negative, and nobody will judge you if you test negative and don’t get involved. The only person you have to face every day is yourself. Each of us must figure out what we want in life, regardless of our result. One of the best parts of using a genetic counselor is that they can help you think through how to proceed after receiving your results.
If you test negative but feel called to support the HD community, I encourage you to do so. Whether you’re giving your time, talents, or funds, your contribution can help accelerate research and possible treatments. Every person can make a difference. Even if you don’t have HD, you may be able to participate in observational studies, market research, or clinical trials that need control subjects.
Recently, an HD Genetics client tested negative but wanted to continue to support the HD community. Participating with their time and talents would be too much emotionally, so they set up a recurring monthly donation. They don’t even have to think about it — but they’re still helping in a way that works for them.
There are many ways to give back, and no matter how big or small, they all make a difference. If I can help point you in the right direction or make a suggestion, please don’t hesitate to reach out.
For those of you processing a negative result, I feel you. Time typically heals all, but please know that your feelings are valid. Don’t feel guilty for having or expressing them.
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.
About the Author
Lauren Holder
Thank you so much for sharing your story. It is so important to hear these stories and know how others potentially feel. I, for one, am so glad you are HD negative! Those who are gene negative have this really amazing perspective - they have an understanding of being at-risk and all the emotions (fear, grief, etc.) that goes along with that, which means that when those of us who are gene-positive can no longer speak for ourselves, those who are gene-negative can still be our voices with a level of understanding that others truly can't get. Also, gene-negative individuals have still dealt with all the struggles that come with being young caregivers for a loved one with HD. So HD still very much affects you, and you have a very unique perspective that people need. You are most definitely not an imposter! Lots of love to you and to all other gene-negative individuals in the HD community. Keep fighting for us! :)