There’s a unique kind of pain that doesn’t come from having Huntington’s disease, but rather having to convince people the disease exists. Living with Huntington’s as a Black woman has meant constantly being disbelieved, questioned, and scrutinized. It has meant being invisible in plain sight. My journey with Huntington’s…
Life with Huntington’s disease often feels unpredictable and overwhelming. There are times when the emotional and physical weight feels like too much to carry. In those moments, humor has often been my saving grace — a source of comfort, distraction, connection, and identity. Yet like many tools we turn…
Huntington’s disease has transformed nearly every part of my life: my body, my emotions, my routines. But one of the most profound changes has been in how I show up as a friend, and how friendship shows up for me. Huntington’s has a way of filtering out relationships. It…
Dating is already hard enough in this world of ghosting, swiping, and shallow connections. Add a terminal illness like Huntington’s disease into the mix and it becomes a minefield of awkward conversations, emotions, and misunderstandings. In the decade that I’ve been living with Huntington’s disease, I’ve been ghosted,…
There is a quiet rebellion in telling the truth about your body, especially when the world would prefer you stay silent, polished, and palatable. When I was diagnosed with Huntington’s disease, I didn’t know how to talk about what was happening inside me. I had learned, like many of…
Huntington’s disease doesn’t give you a map. There is no itinerary, no neatly labeled stages that tell you when and where things will change. It’s a disease of uncertainty, one that rewrites its rules day by day, sometimes hour by hour. It doesn’t ask permission. It doesn’t give warning.
Dear past me, I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in…
I’ve stood in front of classrooms filled with bright-eyed medical students in their freshly pressed white coats, ready to learn the clinical details of Huntington’s disease. They take notes, nod along, and ask technical questions. But when I begin to speak not from a textbook but from lived experience,…
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.”…
Kasia Rothenberg, MD, PhD, is my neuropsychiatrist and one of the most compassionate, skilled providers I’ve had on my care team since being diagnosed with Huntington’s disease (HD). I am proud to share her wisdom with the broader Huntington’s community in this special interview. Rothenberg is the co-director…
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