Writing a letter to advocate for people with Huntington’s 

Huntington’s disease is not the only trait my wife, Jill, inherited from her father. Her sense of humor, justice, and fortitude, while not genetic, was shaped by him as well. Recently, I realized that what we use for comic relief could be a way to advocate for people with the disease.

There’s a saying in Jill’s family that has become a sort of running joke with us, a catch-all response to life’s little (and not-so-little) injustices. Whether it’s a traffic jam that makes us late for dinner, a restaurant meal that doesn’t quite meet expectations, or customer service representatives who seem to have missed the “service” part of their title, someone will inevitably shrug and say, “You should write a letter.”

It’s funny, but it’s also rooted in family history.

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The phrase traces back to Jill’s mother, Edwina, who was the original letter writer. When Jill was a child, she watched her mom pull out a pen and paper — not just to vent, but to advocate. Edwina didn’t just complain; she communicated, and more often than not, companies listened.

Refunds were issued, apologies made, and, sometimes, policies changed. To Jill, and now to me, those letters were proof that a voice, expressed in writing with care and conviction, could make a difference.

The joke recently became reality again, but not in a way that made us laugh. Jill and I found ourselves in a situation that left us both shaken.

Jill lives with Huntington’s disease, a diagnosis that brings daily challenges most people never see. It affects her balance, her processing speed, and sometimes her ability to keep calm under stress.

Motivation to write

We encountered a service provider who, despite Jill’s efforts to explain her condition, seemed to ignore her, treating her as if she were a problem to be managed rather than a person to be helped.

As I watched Jill struggle, I felt helpless. I saw her humiliation and the tears she fought to hold back, and I was angered — not just at the moment, but at a world that too often overlooks people like my wife. Jill managed to get through it, but the sting lingered for both of us.

Later, as we sat together replaying the scene, the old family refrain echoed in my mind. “You should write a letter.” And so I did. Not just to complain, but to process my own grief and anger — for Jill, and for everyone else who’s ever felt invisible because of a disability.

The act of writing was cathartic. It was a way to reclaim some power, to say, “We see you. We deserve better.”

I don’t know if the company will respond. I hope they do. But even if they don’t, I know I’ll keep writing letters. Because advocating for Jill isn’t just about righting wrongs — it’s about love. It’s about refusing to let the world diminish her, or anyone else who faces similar challenges.

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.