What I wish healthcare workers knew about racial bias and rare disease

Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always guaranteed.

I wish more healthcare workers understood how exhausting that can be.

Huntington’s affects movement, mood, cognition, balance, speech, and many other parts of daily life. The symptoms do not always appear neatly, and they do not always match what someone expects to see. When race is added to the equation, assumptions can become even more harmful.

I’ve been told that Black people do not get Huntington’s disease. I’ve had aspects of my diagnosis questioned because they didn’t fit someone else’s expectation of what HD should “look like.” I’ve also experienced moments when symptoms I understood as part of my neurological condition were minimized or misunderstood.

Those experiences stay with you because dismissal is more than a frustrating interaction. It can make you feel as though you have to prove your own reality.

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Rare disease patients often spend years learning our bodies. We know our baseline. We notice when something changes. We know how stress affects us, what medications we take, what other treatments have helped, and what has not. That doesn’t mean we’re trying to practice medicine. It means we bring important information into the room.

I wish healthcare workers would see that knowledge as an asset.

I also wish more providers would recognize that racial bias is not always obvious. Sometimes it appears as disbelief. Sometimes it looks like a symptom being minimized or a patient being labeled difficult when he or she is advocating for themself. Sometimes it shows up in assumptions about which diseases seem possible in certain populations.

Rare disease should invite curiosity, not certainty.

If my experience does not match a textbook example, ask questions. If you are unfamiliar with HD, say so. I would rather have a healthcare professional admit they don’t know something than dismiss what I’m telling them.

Dignity matters just as much as knowledge.

Living with HD is difficult enough. My movements may reveal something about my health before I choose to discuss it. Stress can make symptoms more noticeable, and medical settings can sometimes make communication more difficult. In those moments, I need patience, not judgment.

Talk to me, not around me. Explain what you are doing. Include me in decisions. Do not assume that cognitive changes mean I cannot understand. Do not mistake involuntary movements for behavior that needs to be corrected. Most importantly, do not make me feel like I have to earn the right to be believed. Do not assume I am intoxicated, have a substance problem, or a psychiatric disorder.

I have also had healthcare professionals who get this right. They listen. They make eye contact. They ask questions before making assumptions. They respect what I know about my own body and are willing to learn when something is unfamiliar. Those interactions build trust.

I don’t expect every healthcare worker to know everything about HD, rare disease, or every cultural experience they may encounter. I do expect curiosity, humility, and respect.

Bias can enter a room before anyone says a word. Awareness of that matters.

When a Black woman with a rare disease tells you something is wrong, I hope the first response is not doubt. I hope it is a willingness to listen.

Sometimes the most powerful thing a healthcare professional can communicate is simple: I hear you, and I believe your experience matters.

For patients who have spent years fighting to be seen and understood, that can make all the difference.

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.