HD in Color - a Column by Tanita Allen

There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort. It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk…

There is a particular kind of pain that comes from knowing something is wrong in your body and having medical professionals tell you otherwise. For many people living with Huntington’s disease, the road to diagnosis is already long, confusing, and frightening. But for some of us, that road…

One of the hardest parts of living with Huntington’s disease is when other people don’t believe me when I discuss my health. I’ve spent years being challenged by medical professionals, questioned by strangers, and even pushed out of organizational spaces that were supposed to support people like me. It…

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…