The real harm of medical gaslighting and what we can do about it

There is a particular kind of pain that comes from knowing something is wrong in your body and having medical professionals tell you otherwise.

For many people living with Huntington’s disease, the road to diagnosis is already long, confusing, and frightening. But for some of us, that road is made even harder by medical gaslighting, when symptoms are minimized, dismissed, misread, or explained away as something else entirely. It is one thing to be scared of what is happening to you. It is another thing to be told, directly or indirectly, that what is happening is not really happening at all.

I know this pain well.

Before I was diagnosed, I knew my body was changing. The movements started subtly, first in my fingers and toes. Involuntary movements progressed to my whole body. I was terrified. Over time, those symptoms became harder to ignore. My balance changed. My body no longer moved the way I wanted it to. I felt like I was losing control in ways that were visible to me, even if they were not yet obvious to everyone else. But instead of answers, I ran into assumptions.

Recommended Reading

March 19, 2026 Columns by Tanita Allen

The reality of invisible symptoms and the myth of ‘you don’t look sick’

A thief of time, confidence, and trust

I was labeled in ways that had nothing to do with the truth of my experience. I was treated as though I might be using drugs or alcohol. At times, I was made to feel like I was exaggerating, unstable, or imagining things. The focus was not on curiosity or compassion. It was on suspicion. That kind of response does something to a person. It makes you question your own reality, even when you know deep down that something is very wrong.

That is what medical gaslighting does. It steals time, confidence, trust, and dignity.

When you are repeatedly dismissed, you start to wonder whether you should say less. Whether you should ask fewer questions. Whether maybe you are being “too much.” You begin to shrink in rooms where you should be safe enough to speak honestly. You may even delay seeking care because the emotional toll of not being believed becomes almost as painful as the symptoms themselves.

For people with Huntington’s disease, that harm can be enormous. It is already a disease that carries stigma, misunderstanding, and fear. Many people only know the most extreme or outdated images of it. They do not understand the range of symptoms, the complexity of presentation, or the way symptoms can unfold over time. And if you do not look like what a provider thinks Huntington’s disease is supposed to look like, that disbelief can deepen.

Gaslighting does not always sound dramatic. Sometimes it comes in a shrug. Sometimes it manifests in a delayed referral, a dismissive tone, or a provider talking around you instead of to you. Sometimes it comes wrapped in politeness. But the impact is real. When a clinician fails to listen, fails to investigate, or filters your symptoms through stereotypes, the consequences can follow you for years.

And yet, I have learned something important: Being gaslit does not mean I was wrong about my body. It means the person in front of me failed to listen.

Over time, I have learned to trust myself more deeply. I have learned the importance of self-advocacy, second opinions, and documenting what I am experiencing. I have learned that a good care team is not made up only of people with credentials. It is made up of people who know how to listen without ego. People who are willing to say, “Let’s look into this.” People who understand that patients are experts in their own lived experience.

I wish more medical professionals understood that their words do not just land in the moment. They stay with us. A dismissive appointment can echo in a patient’s mind for years. So can a compassionate one.

When I speak about medical gaslighting now, I do so because silence protects the problem. We need more honesty about what happens when patients with rare or poorly understood conditions are not believed. We need more humility in medicine. More listening. More awareness of bias. More room for patients whose stories do not fit the textbook version.

People living with Huntington’s disease deserve care that is informed, respectful, and free of assumptions. We deserve to be believed when we say something is wrong. We deserve not to be reduced to stereotypes, questioned because of our appearance, or dismissed because we do not match someone else’s idea of what illness looks like.

I cannot change what happened to me in those early years. But I can name it now. And naming it is powerful.

Medical gaslighting harmed me. It delayed understanding. It deepened fear. But it did not erase the truth of my experience.

I was telling the truth about my body all along.

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.