I shouldn’t have to fall apart for people to believe the seriousness of my HD

There is something unsettling about living with a disease that people seem to take more seriously when you are struggling than when you are doing well.

I have lived with Huntington’s disease (HD) for more than a decade. During that time, I have learned how to manage my symptoms, advocate for my needs, and make adjustments that allow me to live as independently as possible. I have worked hard to build a life that includes education, travel, meaningful relationships, and opportunities to advocate for others.

Yet sometimes I wonder whether my progress has created an entirely different problem. Have I become too functional for people to believe I am still living with a serious neurological disease?

It is a strange position to occupy. When my movements were more noticeable, people could immediately recognize that something was wrong, even if they didn’t understand what they were witnessing. Today, with medication, therapy, and lifestyle adjustments, my symptoms are often better managed. I can walk into a room, hold a conversation, and participate in activities without someone immediately recognizing that I have HD.

What people don’t see is everything that happens before I enter that room.

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They don’t see the decisions I make about conserving my energy, the preparation required to navigate unfamiliar environments, or the mental calculations involved in determining whether an activity will be manageable. They don’t see the routines I’ve developed to reduce stress or how carefully I consider my surroundings before committing to an engagement.

What appears effortless to someone watching may actually be the result of years of intentional work.

And that brings me to a question I believe deserves more attention: Why do we sometimes measure the seriousness of someone’s illness by how much they appear to be suffering?

We celebrate resilience, independence, and perseverance. We encourage people living with chronic conditions to remain active and engaged. But when they do, their accomplishments can become reasons to question the legitimacy of their challenges.

The message can feel contradictory. We want you to thrive, but not so much that we forget you are sick.

I’ve experienced moments when people seemed surprised by my ability to travel independently, pursue higher education, or speak publicly about my experiences. Sometimes their surprise comes from genuine admiration. Other times, I sense an underlying assumption that someone living with HD shouldn’t be capable of these things.

I find that troubling, not because I need everyone to understand the complexities of HD, but because it reveals how narrow our expectations of disability can be.

There is no single way to look, behave, or function when living with HD. Our experiences vary, our symptoms fluctuate, and our abilities can change over time. What I can accomplish today does not guarantee that tomorrow will look the same.

And perhaps most importantly, my ability to accomplish something does not tell you what it costs me to do it.

There are days when participating in life requires more effort than I care to explain. Sometimes I choose to attend an event knowing I will need substantial rest afterward. I also recognize that I have privileges within my circumstances. I have access to medical care, treatments, and resources that have helped improve my quality of life. I have worked with professionals who understand the importance of looking beyond a diagnosis and supporting the whole person.

I am grateful for that. But gratitude doesn’t erase the realities of my condition. Progress doesn’t mean recovery. Independence doesn’t mean the absence of limitations.

For years, I’ve challenged the assumption that living with HD automatically means surrendering every possibility for a meaningful life. I refuse to define myself exclusively by what this disease may eventually take away. At the same time, I refuse to minimize my experiences simply because I’ve found ways to adapt.

I don’t want to be admired for overcoming my diagnosis one day and questioned about its seriousness the next. I want something much simpler: the freedom to exist without constantly having to prove either my strength or my struggle.

Perhaps we need to reconsider what it means to believe someone living with a chronic illness. Belief shouldn’t depend on witnessing their worst day. Compassion shouldn’t require visible deterioration. And support shouldn’t disappear simply because someone has developed effective ways to manage their condition.

I’m proud of how far I’ve come. I’m proud of the life I continue to create. I’m also realistic about the disease I live with. Those truths can coexist.

I shouldn’t have to become less capable to be considered more credible. And neither should anyone else living with Huntington’s disease.

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.