The transition from summer into fall is beautiful, with cooler breezes, golden leaves, and cozy routines. But for someone living with Huntington’s disease, the change isn’t just about swapping flip-flops for sweaters. Seasonal shifts can bring real changes in how our bodies feel, how our moods flow, and how…
September has always signified a quiet shift for me. It’s evident in the crispness of the air, the softened light, and the way the days naturally fall into a steadier rhythm. Even though the calendar says the year is winding down, this month feels like a beginning. It’s not the…
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,…
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