Tanita Allen, a writer, speaker, and patient advocate living with Huntington’s disease, shares what advocacy means to her — from speaking up in medical settings and setting boundaries to challenging misconceptions and amplifying patient voices. Read her column HD in Color.
Transcript
Hi, my name is Tanita Allen, and I live in Cleveland, Ohio. I’m a symptomatic person with Huntington’s disease. I am a writer, speaker, and patient advocate. I’m here to talk about advocacy today and what it looks like with Huntington’s.
For me, advocacy is using your voice. It’s making sure you’re seen, heard, and supported. Advocacy is speaking up in medical spaces. It’s asking questions — sometimes questions you don’t want to ask, but you have to ask.
It’s setting boundaries. It’s naming what you need and without having to apologize for it.
Advocacy is also about changing the story that society says about Huntington’s disease. We are not a one-size-fits-all disease.
We all don’t look alike. We all aren’t the same age. The same, you know, we don’t come from the same backgrounds. We come from all over the world. And we are not just a diagnosis. We are human beings, and we deserve care, respect, and dignity.
Some ways that I advocate for myself: I like to prepare for appointments. I write things down. I track my symptoms. I bring questions.
If I can, I will ask for accommodations when I need them. For example, I’m in graduate school, and I will ask for accommodations, have extra time on assignments, extra time on tests. And if I don’t feel well that day, I give myself permission to rest. I’m not trying to make anybody else comfortable because of my symptoms.
For my community, for the Huntington’s community, advocacy looks like visibility. I share my story publicly because a lot of people run with the narrative that Black people or people of color don’t get Huntington’s disease as often as someone who is not.
And I show up in spaces where patient voices should be heard. Spoken at medical schools and public health departments, and speaking to health care professionals, scientists, researchers.
For me, stigma thrives in silence. So when you’re quiet and you don’t share your story, that’s like accepting the status quo. And when I share my story, I’m pushing back against the misinformation and the fear that a lot of people have when it comes to Huntington’s disease.
If I had to give a tip about advocating for yourself, I would say start small. Advocacy doesn’t have to be public. You know, it could be saying things to a person like, “Can you please slow down? Can you please explain that again? I need help with this.”
Asking for what you need is, is advocating also. You know, it’s not about necessarily getting up in front of a bunch of people and telling your story. You don’t have to do that if you don’t want to.
Write things down. Bring notes. Bring a support person if it’s possible. Third, share your story in a way that feels safe for you. You don’t owe anyone your medical history, but your voice does matter, and you choose how you get to use it.