Breaking the Stigma: Being Open About Huntington’s Disease

There is a certain kind of silence that can grow around a diagnosis like Huntington’s disease. It is not always the silence of acceptance or privacy. Sometimes it is the silence that comes from fear. Fear of being judged. Fear of being misunderstood. Fear that once people know, they will stop seeing the person and only see the disease.

I understand that silence because I have lived close to it.

Huntington’s disease is not just a medical condition. It is a condition that carries layers of misunderstanding, assumption, and stigma. People hear “neurodegenerative disease” and often imagine the worst before they ever ask a question. They may assume that a person with HD cannot live a meaningful life, make decisions, work toward goals, love deeply, contribute to the world, or dream about the future. They may see movements, mood changes, balance issues, or speech differences and make cruel or uninformed judgments.

I know what it feels like to be looked at before being understood.

Before my diagnosis, I experienced symptoms that were visible, confusing, and frightening. My body was doing things I could not explain. Movements started in my fingers and toes and eventually spread throughout my body. I had balance issues. I knew something was wrong, but instead of always being met with curiosity or compassion, I was met with judgment. I was labeled in ways that were painful and untrue. People assumed I was on drugs. They assumed I was drunk. They assumed I was unstable. Some medical professionals dismissed me before they truly listened.

That kind of stigma hurts because it does not just question your symptoms. It questions your character.

For me, one of the most painful parts of my journey was being told, directly or indirectly, that Huntington’s disease did not belong to someone who looked like me. As a Black woman, I encountered the dangerous myth that Black people do not get Huntington’s disease. That misconception delayed understanding, created doubt, and added another layer of isolation to an already painful experience. It is hard enough to fight for answers when your body is changing. It is even harder when people’s bias stands between you and the care you deserve.

When I finally received my diagnosis through genetic testing, I thought proof would bring peace. In some ways, it did. It gave a name to what I was experiencing. But it did not erase the stigma. Even years later, I have had people question whether I was “sick enough.” I have had people doubt my diagnosis because of their limited understanding of HD. I have had people look at me on a good day and assume I must be fine. I have also had people see my movements on a hard day and treat me as if I was fragile, incapable, or strange.

That is the complicated reality of living openly with Huntington’s disease. Some days, you are judged because people cannot see enough. Other days, you are judged because they see too much.

Being open about HD has not always been easy for me. Visibility comes with vulnerability. When I share my story, I am not sharing a polished version of illness. I am sharing something deeply personal. I am sharing the reality of living in a body that can be unpredictable. I am sharing the grief of losing parts of my former self while still fighting to honor the woman I am becoming. I am sharing the truth that chronic illness does not take away my humanity, my intelligence, my beauty, my voice, or my worth.

That is why I advocate.

Advocacy, for me, did not begin as something glamorous or public. It began in doctors’ offices, asking questions and insisting that my symptoms be taken seriously. It began by correcting assumptions when people misunderstood my movements. It began by explaining that HD is genetic, neurological, and complex. It began by learning how to say, “This is what I need,” even when my voice trembled. Self-advocacy became a survival tool.

Over time, my advocacy grew. I began telling my story more publicly because I knew I was not the only one living with the weight of stigma. I thought about the person sitting at home, newly diagnosed, wondering if their life was over. I thought about the Black woman searching for answers and being dismissed. I thought about the family afraid to talk about HD because they had only seen it presented as tragedy. I thought about the medical student who might one day meet a patient like me and remember that Huntington’s disease has many faces.

Being open about Huntington’s disease has also helped me reclaim power. Stigma thrives in secrecy. It grows when people are too afraid to speak. Every time I tell the truth about my experience, I take back a piece of the narrative. I remind myself and others that HD is part of my story, but it is not the author of my entire life.

I am more than my diagnosis.

Breaking stigma does not happen all at once. It happens every time we choose truth over silence. It happens when we correct myths. It happens when we educate healthcare providers. It happens when we make room for people of color in conversations about rare and genetic diseases. It happens when we stop treating people with HD as tragedies and start honoring them as whole human beings.

I want a world where people with Huntington’s disease do not have to prove their pain to be believed. I want a world where families can talk openly without shame. I want a world where a Black woman with HD is not treated as an exception, but as someone whose story matters. I want a world where our symptoms are met with compassion, not judgment.

Until then, I will keep speaking.

Because my story deserves to be heard. Our stories deserve to be heard. And every honest conversation brings us one step closer to freedom from stigma.