HD in Color — Tanita Allen

There is a type of grief that isn’t always discussed in the Huntington’s disease community, even though many of us live with it every day. It’s the grief of losing versions of yourself while still being very much alive. I have grieved the loss of some of my abilities.

One of the most exhausting parts of living with Huntington’s disease isn’t always the symptoms. Sometimes it’s having to constantly explain them (or at least try). There’s a phrase many of us with chronic illness have heard far too often: “But you don’t look sick.” People usually say it…

There was a time when I measured a good day by how closely it resembled my old life. Could I move fast enough? Think clearly enough? Get everything done on my to-do list? Look “normal” enough in public so that no one stared too long or asked if I was…

I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the…

The thing about being present in public is that people think it’s just a mindset. Like you decide to show up, take a deep breath, smile, and you’re there — grounded, confident, fine. But when you live with Huntington’s disease, being present in public can feel like a full-time…

Some days, my brain feels like it’s buffering. Not in a dramatic, emergency kind of way. It’s more like I’m standing in my kitchen with a cup in my hand, trying to remember why I walked in there in the first place. I can see what needs to happen next,…

Dating with Huntington’s disease (HD) has taught me how quickly people confuse honesty with a warning label. I used to believe that telling the truth early on in the process was the kindest thing I could do. I still believe in honesty, but I’ve learned that it doesn’t protect…

February has a quiet way of exposing what the holidays can hide. In December, people check in. They send the “thinking of you” texts. They ask how you’re holding up. Even the people who don’t know what to say still make an effort to say something, because the season almost…

Anger is one of the most misunderstood and quickly judged symptoms of Huntington’s disease. When people hear the word “anger,” they often picture a personality flaw. They might assume it’s an attitude problem, a character issue, or a choice. Rarely do they consider neurodegeneration or other shifts…

January is loud. It shows up with fireworks, fresh calendars, and the not-so-subtle message that you should reinvent yourself by Monday. There’s a whole culture built around before-and-after photos and big declarations, as if being human is a project you can complete with enough discipline. Living with Huntington’s disease…

There’s a moment many Huntington’s disease (HD) caregivers can describe with uncomfortable clarity: the day you realize you’re not just helping anymore — you’re holding everything together. At first, it looks like small adjustments. You drive to appointments. You repeat yourself a little more often. You quietly take over…