In raising HD awareness, we must be mindful of the stories we tell

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.

While Huntington’s Disease Awareness Month brings greater awareness, this also comes with added responsibility. It is not enough to simply gather people in a room, speak about Huntington’s disease (HD), and call it education. We have to ask deeper questions about who is leading the conversation, whose voices are centered, and what emotional weight people are expected to carry when they walk into these spaces.

I have attended HD educational events as a symptomatic woman hoping to feel supported, informed, and strengthened. Sometimes I have left feeling the opposite: heavy, afraid, and reminded of the worst possible outcomes of this disease.

HD is horrific. I will never minimize that. It affects movement, mood, thinking, relationships, independence, and identity. It changes families. It steals things from people in ways that are painful to name. But when the narrative at HD events becomes only doom and gloom, it can do harm, especially to those of us who are currently living with symptoms.

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Too often, the loudest voices in the room are not people who are symptomatic. Sometimes the conversation is led by people who are asymptomatic, gene-positive, caregivers, professionals, or even people who do not carry the HD gene. I want to be clear: These people deserve support, too. Caregivers carry grief. At-risk individuals carry fear. Gene-positive people who are not yet symptomatic carry an emotional burden that is real. Families deserve community.

But support should not come at the expense of silencing or emotionally overwhelming the people who are already living inside the disease.

There is a difference between education and trauma bonding. There is a difference between telling the truth and repeatedly centering horror stories. I have been in spaces where people share graphic details about how a loved one suffered or died from HD. I understand the need to tell those stories. I understand grief needing a place to land. But I also know what it feels like to sit there as a symptomatic person and wonder, “Is this how everyone sees me? Is this what they think my life is becoming? Am I already being mourned while I am still here?”

That is a painful place to be.

It may be comforting to know I am not alone, but it is not always helpful to be surrounded by despair. Sometimes what people call “awareness” feels like a public rehearsal of my worst fears. Sometimes it feels like people are talking about me as if I am already gone.

I am not dead. I am living.

I am living with symptoms. I am living with uncertainty. I am living with fatigue, movement challenges, anxiety, and the emotional reality of this disease. But I am also living with purpose. I am writing. I am advocating. I am studying. I am speaking. I am building a life that still belongs to me.

That part of the story deserves space, too.

As science continues to evolve, many of us are holding on to hope that one day HD will be eradicated or that its progression will be significantly slowed. Research is moving. Conversations are changing. Families are becoming more informed. People with HD are using their voices in powerful ways. Hope is not denial. Hope is survival.

For people living with HD, empowerment matters. Autonomy matters. Tone matters. The way a room is facilitated matters. When someone is already navigating a progressive neurological illness, they do not need to be spoken to with pity. They do not need to be treated like a warning sign. They do not need to be reduced to someone else’s tragic ending.

They need to be seen as whole people.

This is especially important because suicide risk is very real in the HD community. That reality should make facilitators more careful, not more careless. Educational programs should be designed with emotional safety in mind. Facilitators are not mental health professionals, unless they are trained and licensed as such. They should be mindful of the stories they invite, the questions they ask, and the emotional tone they create.

There should be balance. Yes, tell the truth about HD. Yes, talk about caregiving, grief, disability, and loss. But also talk about adaptation, dignity, research, wellness, advocacy, relationships, creativity, and joy. Talk about the people who are still here. Invite symptomatic people to speak for themselves. Do not just talk about us. Make room for us.

People with HD deserve more than pity. We deserve more than fear-based awareness. We deserve spaces that tell the truth without burying us alive. We are not just stories of decline. We are people with voices, choices, wisdom, and hope.

And we are still here.

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.