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.

HDYou Community Stories is sponsored by Neurocrine Biosciences, uniQure, Teva Pharmaceutical, Roche, Wave Life Sciences and Griffin Foundation.

Annie's Story

My name is Annie, I'm in my 40s and I live in the United States. I tested gene-positive in my 20s and now have early symptoms.

What has your social life been like throughout your life?

I've prioritized building a big strong network of friends everywhere I've lived since testing positive. I was still around most of my college friends during the testing process and saw how important having a group of folks I could rely on was for all of us - that it wasn't just me relying only on one or two other people. The friendships I've made have meant the world to me. And all of us go through something awful at some point or another, everyone benefits from having a network of people who care and prioritize keeping friendships strong.

What is like having friends that are also impacted by HD and having friends who are not?

I love the friends I have in the HD community, even if it's longer between times we talk or times we see each other, because we've shown up for each other in the past and will in the future and just knowing that there's a deep shared understanding of what we're going through and the unexpected ways it can affect us. It's a group of folks that gets the gallows humor but also the underlying hope, and I'm so grateful for that and for them!

The friends I've been closest to even outside the HD community are still folks who are dealing with their chronic illness or family issues or similar struggles about uncertain futures, whatever that looks like for them. So while they might not know the HD specifics as personally, they have a lot they can relate to and we ask lots of questions and try to figure out the best ways to support each other.

At what point in a friendship do you talk about Huntington’s Disease, if at all?

When I first found out about it being in my family, I generally only told friends I already knew well and held back a bit with new friends after a few regretted instances of telling people too soon. Over the years, I've gotten better at sensing whether someone is going to be a good friend and a close friend, and been more confident sharing that earlier with those folks. On the flip side, I also listen to my gut more when I don't feel comfortable sharing that with someone new in my life - and that's a sign they probably aren't a good fit for me.

How do you balance HD and your social life?

I still don't always get it perfectly right (saying yes to something when I know I won't have the right energy for it because I want to see a friend I haven't seen in a while and then being a bit out of it when we're together), but between texting and group chats and video chats instead of visits sometimes, I also feel better knowing we can still catch up and it just might look different for a while when HD or some other issue is taking more of my time for a season. Having dear friends who understand that and support that is everything!

What role has HD played in your relationships? How do you think it might play a role in your future friendships?

I've intentionally spent more time and energy on friendships than on romantic relationships in part because of HD and wanting to have a big network of support and friendship - and in part because I'm that much more cautious about the effect HD has on a partner and hadn't met anyone I really wanted to figure that out with. The person I'm dating now was a close friend first, and so has known about HD for a while and knows how it affects my life now and the ways it might in the future. They're fantastic, and I'm hopeful that already having a foundation for speaking transparently about it will help as things get more complex.

Any last thoughts on HD, social life, and friendships?

I see friendships and maintaining deep connections as being as important as exercise and sleep and all of the other pieces of being prepared for HD and adjusting with its progression. It can be hard to find the right balance all the time - and know that the balance will shift and shift again - but the joy and love and connection of friendships is so essential.

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