How my wife and I navigate the risks of depression in Huntington’s
An 'emotional emergency kit' helps to ensure my wife's safety
Note: This column discusses suicide. Resources for help are listed at the end of the column.
In the Huntington’s disease community, I’ve noticed that conversations about depression and suicide are often avoided or treated as taboo. Medical professionals sometimes warn families like ours that suicide may be an outcome for those diagnosed with Huntington’s. But my wife, Jill, and I believe that this narrative can actually be harmful to the spirit and hope of our community.
Still, we can’t ignore the disease’s relentlessly devastating nature. Those who are gene-positive, like Jill and our daughter, will likely experience a massive loss of cognitive ability and troublesome psychiatric problems.
However, just as you’d prepare an emergency kit for a storm that might never arrive, Jill and I have chosen to put safety measures in place — practical, compassionate steps to guard against the possibility of depression deepening into something more dangerous.
We believe that constantly emphasizing suicide as a likely outcome only reinforces fear and hopelessness, rather than resilience. We want to foster a more balanced, honest conversation — one that respects the real risks of depression in Huntington’s, but doesn’t treat them as inevitable.
To make sure Jill never has to face her darkest moments alone or in silence, we’ve developed a simple routine.
Every few days, I ask Jill how she’s feeling and if there’s anything she’d like to talk about. It’s my way to invite her to have an honest conversation about her emotional state. I also share with her any shifts I’ve seen in her mood or behavior. She knows I’m sharing these observations to help her determine if she needs an intervention or adjustment to her medication.
We also realize that these check-ins help prevent us from denying any harsh reality she may be facing as the disease progresses. It’s also a way for me to ensure that Jill knows she isn’t alone or misunderstood.
For Jill, this routine isn’t about finding a magic solution. It’s about creating a lifeline, a way to stay tethered to the world, even when her life and feelings may seem overwhelming. For me, it’s a way to be an active partner in her well-being, rather than a passive bystander.
Our approach reminds us that our journey is one of compassion, not fatalism. By cultivating open dialogue and mutual support, we’re building an emotional emergency kit — one we may never need to use, but whose existence still offers comfort, connection, and security.
If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K. (samaritans.org).
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.
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