Time for the “third hat”: A personal story

Sarah is a clinical psychologist and researcher in Huntington’s disease. She has been working with the Huntington's Disease Association for several years, helping to support people affected by Huntington’s with their mental wellbeing. For the first time, she is talking about her experience as part of a Huntington’s family and how this has impacted her personal and professional life. Her book, “Coping with Huntington’s”, comes out on 1 July.

We have planned a webinar with Sarah on 27 August 2026, and you can follow her on Instagram @HDinMind.

I’m getting a bit more used to saying it, day by day…

Hi. I’m Sarah, and I’m from a Huntington’s family.

Some of you might know me from the psychological work I’m doing in collaboration with the Huntington's Disease Association. We’re trying to make mental health support better and more accessible for people affected by Huntington’s by offering free group therapy programmes to support mental wellbeing. I’m also a researcher in the psychology of Huntington’s. I really, really love my work with and for the Huntington’s community. 

But my work isn’t why I’m writing here today. 

I sometimes describe myself as wearing three hats: therapist, researcher, and person living at risk of Huntington’s. For the rest of this article, I’m putting my “HD family hat” on.

This isn’t a hat I’ve worn in public, until now. In fact, I wrote an anonymous blog for the Huntington's Disease Association about how I wasn’t ready to wear it, back in 2023. I took the advice I always give to others about when to disclose: I took my time, thought it over, and waited until I was sure – because “you can’t put the toothpaste back in the tube”. Once it’s out, it’s out. For obvious reasons, I also waited until my close family felt happy with me disclosing my “status”.

So it’s now definitely out, in all sorts of ways. I have a book coming out soon, for starters, so basically overnight I’ve skipped merrily from barely telling anyone to literally the entire world being able to find out if they Google me. I recently argued successfully (hurrah!) that the wonderful Wellcome charitable foundation should invest almost two million pounds in Huntington's disease mental health research, and part of my argument was that I’m from a Huntington’s family myself, so I have a good idea of what’s needed and what’s missing.

After it being a secret for so long, it feels like a bit like jumping out of a plane without knowing whether your parachute will open. But here’s the incredible thing about the Huntington’s community, which I’ve seen over and over for others: they’ll catch you every time. I’ve been blown away to be the subject of the unconditional positivity and kindness of the community, since taking my first wobbly step onto Instagram with my “third hat” on in late May this year. I have so much gratitude, it’s near impossible to put into words.

As a therapist, one of the things I hear most from people affected by Huntington’s is something like: “I feel you understand me”. I’m certain not everyone feels that way having had therapy with me, though I would love it if they did, and I’m always really happy when people do feel that. And I do understand, to the inevitably limited degree that one person can ever walk in the shoes of another. I’ve been the terrified young adult finding out that there’s a genetic shadow rearing its head in her background; I’ve seen my dad sectioned as his physical and mental wellbeing deteriorated; I’ve seen my mum battle the emotional consequences of accepting her husband needed to move into a care home, after doing the very best she could for a long time. I’m 40 now, right in the middle of the window for typical onset of Huntington’s (if I carry the gene expansion), and some days, that scares me half to death – mostly because there’s so much that I still want to do, in all sorts of ways.

But this is where my personal and professional lives fortunately overlap, because I’ve done my best to learn to deal with all those difficult emotions and experiences, and then done my best to share what I’ve learned with everyone else. I can’t stop Huntington’s being scary and horrendously unfair and all-around rubbish – I can’t change that for myself or anyone else. But I can say confidently that having learned to focus on what’s important to me, to make the best life I can (no matter how long that life ends up being, or if and when Huntington’s knocks on my door), has helped me to live well alongside it as much as that’s possible. It’s never going to be perfect, but as I’m fond of saying, “good enough is good enough”.

I’m going to finish with two last things. The first is to repeat what I’ve said in my book, because I thought about it very carefully when I wrote it, and I mean it wholeheartedly.

I am so deeply proud to be part of this community that none of us asked to join, because we care for each other deeply, and we never give up.

True when I wrote it last year, true now, true forever.

And the second is just a huge thank you. To those who’ve kept my secret, and those who’ve been so kind when they found it out; to the Huntington's Disease Association for graciously allowing me to be a small part of their work, and to the Huntington's community for letting me do my little bit to try and help where I can. You’ve all been a light in the dark for me, even when you didn’t know it. Thank you.