Sometimes Huntington’s awareness means educating those who help me
Many workers in healthcare settings still aren't familiar with Huntington's disease
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While reflecting on Huntington’s Disease Awareness Month, I am reminded that advocacy isn’t something I do only on a stage, in a column, or at an awareness event. Advocacy shows up in every part of my life, including the moments when I’m simply trying to receive basic medical care.
I recently went to urgent care because I was having respiratory issues. I had a cold, allergies, and trouble breathing. Like anyone else, I needed help. I was seen by a nurse practitioner and a nursing student. When the nurse practitioner heard me wheezing, she immediately ordered a breathing treatment.
The treatment worked — my breathing improved dramatically, and I was grateful. But then my Huntington’s disease (HD) entered the room in a way I could not hide.
I started having choreatic movements. On a scale of 1 to 10, with 10 being extreme, I’d say it was a solid 5. Because I’ve been diagnosed since 2012, I’ve adjusted to living with chorea that is often hidden by medication. Many people don’t see the full picture of my symptoms because medication helps quiet the movements. But stress, illness, and certain medications can bring them forward.
A medication that may make another person feel a little jittery can make my body move in a way that looks alarming to people who do not understand HD.
When the nurses came back into the room, I could see the fear on their faces. The nurse practitioner thought I was having a seizure. She looked alarmed and went to the computer to check my medical records. She kept asking if I was OK and whether I needed to go to the emergency room.
I was the patient. I was the one shaking uncontrollably. I was the one who came in because I could not breathe well. And yet, in that moment, I became the calmest person in the room.
Huntington’s awareness is being treated with understanding
I explained that what she was seeing was Huntington’s disease. I told her that this was chorea, not a seizure. I gave her a brief overview of HD and explained that this was a symptom, especially after stress and a breathing treatment. She admitted that she had never met anyone like me before, and she was worried about me.
I appreciated her honesty. I appreciated that she cared. But I also felt the weight of what it means to be rare, misunderstood, and visibly symptomatic in a healthcare setting.
She kept asking, “What should I do? How can I help?” Those are kind questions. But they also revealed a painful truth: Many medical professionals still do not know what to do when Huntington’s disease is standing in front of them.
That urgent care visit brought me back to so many difficult memories. It reminded me of emergency room visits where people didn’t understand my movements. It reminded me of the times I had to call 911 after a fall and could feel the uncertainty from EMTs who were afraid to treat me. It reminded me of the fear I have carried in medical settings, not only because of what is happening in my body, but because I often have to educate the people who are supposed to help me.
That is a frightening place to be.
People with Huntington’s disease still get colds. We still have allergies. We still have asthma symptoms, infections, injuries, stomach issues, dental problems, and emergencies unrelated to HD. We need urgent care clinics, emergency departments, primary care offices, specialists, dentists, nurses, EMTs, and medical assistants to understand that HD may be part of the picture, but it is not the only reason we seek care. We are whole people with whole bodies.
Awareness cannot only live inside the Huntington’s community. It needs to reach the wider medical community, too. It needs to reach the professionals who may only meet one person with HD in their entire career. That one person still deserves calm, competent, compassionate care.
In that urgent care room, I realized once again that advocacy is part of my healthcare. I advocate when I explain my symptoms. I advocate when I correct assumptions. I advocate when I stay calm so others can learn. But I shouldn’t always have to carry that responsibility while I am the one in distress.
This is why Huntington’s Disease Awareness Month matters.
Awareness is not just about wearing blue. It’s not just about fundraising or sharing facts. It’s also about making sure that people living with HD can walk into any medical setting and be treated with understanding instead of fear.
Because it is really scary when you are the patient, you are struggling, and somehow you are still the one comforting everyone else.
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.
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