A diagnosis of Huntington’s disease has nothing to do with karma
Couple tackles heartbreaking question of ‘why me?’ during raw conversation
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I thought I understood the highs and lows that come with Huntington’s disease, including the unfiltered comments and raw emotions my wife, Jill, sometimes shares with me. I have seen her frustration, her dark humor, and her moments of deep sadness. But nothing prepared me for what it feels like to sit on the couch next to someone you love and hear her ask if she somehow earned getting a rare terminal illness.
This conversation recently occurred as we were watching a television show. When someone referred to the bad guy as “getting what he deserved” — calling it karma — I felt Jill stiffen beside me. She grabbed the remote, paused the screen, and turned toward me with tears in her eyes.
“Do you think karma is real?” she asked.
Her voice had that edge I have learned to recognize, the one that comes out when fear and anger collide. Before I could answer, she went on.
“Because if it is, what did I do?” she said. “What did I ever do that was so bad that I deserve Huntington’s disease?”
‘Not some cosmic punishment system’
Her words hung in the air between us. I had heard about people wrestling with “Why me?” when facing serious illnesses, but this was the first time Jill had said it out loud in such a raw way. I could see she wasn’t just asking about herself. She was asking for everyone living with this disease, and for all the families still waiting for their own genetic test results.
My first instinct was to rush in with reassurance. “You did nothing wrong,” I said. “This is not karma. Huntington’s is a genetic disease, not some cosmic punishment system.”
Scientifically, that is true. Emotionally, it does not always feel like enough.
Jill stared down at her hands and listed all the ways she had tried to be a good person: caring for students at her former job at a school, loving her family, volunteering, and trying to be kind, even when it was hard. “And still,” she said, “I get this.”
I reached for her hand and reminded her that the gene mutation that causes Huntington’s disease does not check a moral scorecard before it appears. It is passed down, generation to generation, indifferent to who we are or what we have done. That indifference is what makes it feel so cruel.
But I also told her this: If karma worked the way those slogans suggest, she would be one of the healthiest people on the planet.
Huntington’s does not discriminate
We sat quietly for a while. She was still wrestling with the idea, so I asked what had brought the question on. She said she had been reading stories from others in the Huntington’s community. Some wondered if they had done something wrong. Others worried that their children would think they had “given” them this on purpose. That broke her heart.
I reminded her that when people talk about karma, they are often trying to make sense of chaos. It is comforting to imagine a neat equation where good behavior equals good outcomes, and bad behavior equals bad outcomes. The problem is that Huntington’s disease, like many serious illnesses, blows that equation apart. It shows up in kind people and unkind people. It affects those who have done everything “right” and those who have not. It does not discriminate.
What we do have control over, I told her, is the kind of meaning we choose to build around it.
Jill listened and then, slowly, began to nod. She said that maybe the real measure of a life is not whether something terrible happens to you, but what you do with it when it does. She talked about people she has met in the Huntington’s community who have turned their pain into advocacy, support, and love for others who are scared and newly diagnosed. She mentioned the families who share their stories so that researchers, clinicians, and policymakers will not forget what — and who — are at stake.
By the end of our conversation, Jill was still living with Huntington’s, and she still carried fear and grief. Those did not vanish with a few reassuring words. But the question shifted slightly. Instead of “What did I do to deserve this?” she began to ask, “What can I do with this that reflects who I really am?”
That is not karma. That is courage.
When I think back to that paused television show and Jill’s tearful question, I remember how helpless I felt in that moment. I cannot rewrite her genes or promise her an easy road. What I can do, and what I will keep doing, is stand beside her as we choose, again and again, to define her life by more than a diagnosis.
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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