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

As everyone who reads this column knows, Huntington’s disease (HD) is a devastating illness for those who test positive on a genetic test. But it can be equally terrible for family members who test negative.

I’m referring to survivor’s guilt, which happens when someone feels guilty for surviving a life-threatening situation in which someone else dies.

The topic of survivor’s guilt recently came up during a conversation my wife, Jill, and I had regarding a virtual panel discussion that she and our daughter, Alexus, participated in. The discussion addressed difficult conversations that occur in HD families. Sadly, Jill and Alexus understand this topic all too well because both are gene-positive for HD.

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After Jill was done with the Zoom call, we went for a walk. We talked about all of the things she and Alexus had discussed that had made her sad, but something someone else said had also touched her. One participant in the discussion had relatives who are gene-positive, and she mentioned that her own negative genetic test had caused her to experience survivor’s guilt.

This made Jill stop and think. She told me that many family members of gene-positive people spend so much time worrying about how Huntington’s will affect their loved ones that they forget to take care of those who aren’t gene-positive. Watching someone else suffer from HD while not having it can lead to major feelings of guilt, she said.

If Jill had tested negative for HD in 2018, we would’ve been ecstatic. But she still would have felt a sense of deep sadness for several family members who had tested positive over the years. This includes a long list of aunts, uncles, cousins, and her late beloved father.

Jill said that testing negative for HD would have prompted her to ask why it had happened to the others, but not to her. Why would she be unable to alleviate the suffering they were experiencing?

In researching this column, I found that those types of questions are typical of people experiencing survivor’s guilt. There are several ways to deal with these feelings, and it’s important to understand that they are normal and understandable. Sharing how you feel with others, such as with loved ones or members of a support group, can be helpful. Practicing self-care and doing good for others also are healthy avenues for coping and overcoming the guilt.

One important resource is the Huntington’s Disease Society of America, which has mental health counselors, psychiatrists, social workers, and other experts at their many centers of excellence.

As awful as survivor’s guilt can be, I hope that families will talk about it and bring to light the idea that a negative result on an HD genetic test isn’t cause for sadness, but rather a reminder that life is precious. Not having a horrific illness is something to be grateful for. If you are experiencing survivor’s guilt, don’t be afraid to reach out for help.

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.