What I want people to stop saying about Huntington’s disease
I'm not a tragedy, nor am I a hero. I'm a person.
When people find out I have Huntington’s disease, there’s often a long pause, followed by a look I’ve come to recognize all too well: pity. Their eyebrows crease. Their voices drop an octave. They fumble for comforting words that often make me feel anything but comforted:
“I’m so sorry.”
“You’re so brave.”
“I can’t imagine going through that.”
“I could never live like that.”
I know these statements are meant to be kind. But what they do is turn my life into a tragedy in the eyes of the speaker. And I am not a tragedy.
Living with Huntington’s disease isn’t easy, but reducing my experience to sorrow or pity takes away the fullness of who I am. I live with a severe neurodegenerative disease, yes, but I also live with purpose, passion, joy, and humor. I am not a sob story. I am a person.
When someone calls me brave, it often feels like they’re distancing themselves from my reality. It’s as if bravery is the only way they can make sense of the fact that I’m still living, still smiling, still showing up in the world with dignity. But let me be honest: I didn’t choose this path to be brave. I didn’t sign up for this diagnosis with a sword in my hand and armor on my back. I cried. I broke down. I still do. But I also get back up, because this is my life, and I want to live it fully.
Other times, people will tell me I’m an inspiration simply for existing with Huntington’s. I understand the intention behind it, but it places unnecessary pressure on me. It makes me feel like I have to constantly prove my worth, strength, or positivity. Sometimes I want to be allowed to have a bad day without being anyone’s role model. I want to be able to feel tired, angry, or scared without someone telling me to keep fighting. Not everything has to be turned into a motivational quote.
When we center the narrative of illness on tragedy or valor, we miss the complex and beautiful in-between. I am not brave every day. I am not suffering every day. I am a woman learning to live in the midst of uncertainty and finding light even in the shadows.
So what do I wish people would say instead?
“How are you feeling today?”
“Is there anything you need right now?”
“I’m here for you.”
“That sounds hard. I’m listening.”
These words ground me in the present. They offer me space to show up as myself, not a caricature of tragedy or strength.
I also wish people would stop assuming my life is over because of this diagnosis. I’ve written a memoir. I’ve done public speaking. I’ve started a blog. I’ve laughed until my stomach hurt. I’ve felt profound love and connection. And, yes, I’ve also experienced loss, grief, and moments of deep fatigue. All of that is true. All of that is valid.
The problem with pity is that it freezes me in one role: the person you feel sorry for. It makes it harder for you to see the parts of me that are vibrant, creative, and alive. It also makes it harder for me to ask for help, because I don’t want to reinforce your view that I’m helpless.
I don’t want to be your inspiration or your tragedy. I want to be your friend, your peer, your neighbor. I want you to ask me about the book I’m reading, the advocacy work I’m doing, or the new recipe I just tried. I want to talk about the movie I loved, the podcast I hated, or the dreams I still carry.
The way we speak to people with chronic illness matters. Our language can either build bridges or create distance. When we romanticize strength or sensationalize suffering, we risk dehumanizing the person in front of us.
So the next time someone shares a diagnosis with you, whether it’s Huntington’s or anything else, pause before you default to pity or praise. Instead, see the person. See their story. See their humanity.
Because we are not walking tragedies.
We are still here.
We are still living.
And we want to be treated like it.
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.
About the Author
Jeannine E. Wheeler
Huntington's runs in my family. I do not have Huntington's, but one son of mine passed away from complications of the disease. I have a son and a granddaughter who now have it, and young family that may have it but cannot be tested because they are too young. Thank God there may be cure for Huntington's.
Jane Rude
I am so proud of you…your article. Your willingness to stand up and be REAL. REAL. As in you bleed if you get cut. You persevere.. you fall off the horse. You get back on. You are sharing your most innermost feelings with the World. You give Hope to others. I am sooo proud of you. My 6’2” gorgeous cowboy went with Jesus. 3 years this August. 2022. He was diagnosed with Huntington’s in January/ 1999. Had many symptoms before then. God makes no mistakes. You are precious. Blessed. Get up and be busy. Or. Get up. Get coffee and rest all day. Read. Dream. I am so proud of you. Surround yourself with positive medical staff. They tell you facts. And they also provide encouragement ! Positive friends. Supportive. Go walk in the drizzly rain Find that double rainbow. Go on a train ride. Sit outside with coffee. You are not your disease. We all have disease, devastation …. We rise above things the best we can. You are a testimony Living your life. People mostly mean well—-however. If someone asks a question that’s very rude. Just stare Smile. Walk away. I’m so proud of you !!
Theresa Guzzo
Fantastic reflection