HD in Color - a Column by Tanita Allen

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s…

One of the hardest things Huntington’s disease has taught me is how to accept help without attaching shame to it. I live independently, and I am proud of that. My independence matters deeply to me. It’s not just about paying bills, keeping appointments, or managing my home. It’s about…

For a long time, I confused boundaries with rejection. I thought boundaries meant distance. I thought they meant being difficult, cold, or selfish. I thought that if I loved people deeply enough, I should be able to keep showing up, giving, understanding, and absorbing whatever came my way. I believed…

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…