HDYou: Community Stories
HDYou Community Stories is a series dedicated to sharing stories from the HD community for the HD community. We are excited to include blogs to that program which will allow young people to tell their story through writing rather than through videos. Explore more HDYou Community Stories here.
The HDYou Community Stories is sponsored by Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.
Finding an LQBTQIA+ community within a rare disease community
I’m 34 years old (a bit of a geriatric youth, I think). I am originally from rural Massachusetts (USA) and I have lived in Philadelphia (USA) since college.
I didn’t know that HD was in my family until I was in my mid-twenties. My grandfather had chorea when I was a kid and loved to rant about politics while flailing his arms around dramatically. However, he wasn’t diagnosed with HD until he was in his 80s. His CAG repeat was in the gray area. My dad has late-onset HD. He is one of the most important people to me. He comes from a big, Irish-Catholic family, and I have several aunts and uncles who have HD. I lived at-risk of HD for a decade before testing negative this year.
What does sharing part of your story mean to you? And why was discussing the intersections of your identities important?
It’s important to be a role model to people coming up behind me. The first time I met a lesbian couple in the HD community, it meant the world to me to have role models. Even though I had met many straight couples who were coping with the challenges of HD together, seeing a gay couple impacted by HD meant that I could also find the kind of love I hoped for in the midst of the challenges that HD brings. And I have. I want young people in the HD community to know that they can bring their whole selves to HD spaces.
How has your LGBTQIA+ community interacted with your HD community and vice versa?
Many people in the HD community have welcomed my girlfriend into HD spaces with open arms. I am grateful that they include her just as they would any other partner, because she was one of the most important and supportive people in my testing journey. Many of my (LGBTQ) friends have taken the time to learn about HD. So many people in my LBGTQ community are exceptional at listening with an open heart, learning about others’ struggles, and showing up with food and song when things get rough. I look to older people in the LGBTQ community for guidance on how to cope with a life-threatening, life-limiting illness and how to keep showing up for each other and caring for each other until there is a treatment or a cure. As Dan Savage said about HIV, “During the darkest days of the AIDS crisis, we buried our friends in the morning, we protested in the afternoon, and we danced all night. The dance kept us in the fight because it was the dance we were fighting for.”
What do you wish people in the HD community knew about the queer community and what it means to be a part of both?
I have found so many people in the HD community who go out of their way to be accepting and supportive of LGBTQ people in HD spaces. I guess it makes sense that being part of the HD community, we understand that every family and every partnership looks a little different. There have been times when I’ve had to remind healthcare professionals that I was gay. Especially when talking about family planning, I think people lock in on the HD side of things and can forget that family planning can look different for people in the LGBTQ community depending on the egg and sperm that are being used to make a baby. In a political climate (in the US) where there has been some recent backsliding on gay rights, I have come across a few HD spaces where I did not feel welcome as a gay person. In those cases, it was important to loop in the many leaders in the community who are very queer-friendly and who were able to advocate on my behalf.
What advice would you share with someone impacted by HD who is looking to explore their LGBTQIA+ identity as well?
Being LGBTQIA+ and part of the HD community is a unique path to walk in life. And, at times, it’s super beautiful. Without painting with too broad a brush, queer community knows how to show up for chosen family. My queer community has had my back when I was struggling the most with HD-related issues. There are more of us in the HD world who are LGBTQ than you’d think. Don’t hesitate to reach out to HDYO and they can put you in touch with ambassadors who identify as LGBTQ+.
The HDYou Community Stories is sponsored by Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.