HD in Color — Tanita Allen

Before Huntington’s disease (HD) became part of my daily life, I thought legacy was something people created at the end of their lives. I thought it was about accomplishments, titles, money, degrees, or what people would say about you after you were gone. I thought legacy was distant, something…

Living with Huntington’s disease (HD) has taught me that food is not just about satisfying hunger. Food is energy. Food is stability. Food is comfort. And it is one of the ways I care for a body that is constantly working harder than most people realize. When people think…

As Huntington’s Disease Awareness Month comes to a close, my heart keeps returning to one word: gratitude. Huntington’s disease (HD) is serious. It can change the way a person moves, thinks, speaks, works, relates, and dreams. It can place an enormous weight on families long before symptoms even…

Every year during Huntington’s Disease Awareness Month in May, I think about what awareness really means. It’s not just wearing blue and purple, posting a graphic on social media, or repeating facts about CAG repeats, chorea, and genetics. Those things matter, but awareness has to grow legs and turn into…

While reflecting on Huntington’s Disease Awareness Month, I am reminded that advocacy isn’t something I do only on a stage, in a column, or at an awareness event. Advocacy shows up in every part of my life, including the moments when I’m simply trying to receive basic medical…

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.