A guest blog from a clinical psychologist who comes from a Huntington's family. This time, they are sharing anonymously about the impact of living with the risk of Huntington’s.

A few months ago, I wrote about living with the risk of Huntington’s. There are many of us in this situation, doing our best to live alongside the grief and doubt that comes with having Huntington’s in our families. It can be so difficult, for many reasons. 

I wrote last time about the value of finding ways to do what gives our lives meaning. That’s still the central message for me, but I think it’s also crucial to talk about the flip side for those of us living at risk or knowing we carry the gene for Huntington’s – the things that can make “living well” with an uncertain future very hard. 

As a therapist, I often hear people (understandably) speak about Huntington’s as a catastrophe. There’s no denying that everyone wishes it had not happened to them, or to their loved one. And coping with that sorrow, resentment and sense of unfairness (why me, why my family?) is really tough. In my view, there are two big reasons for that. One is anxiety, and the other is grief.

I’ll talk about anxiety first, from my own experience. When my dad was diagnosed, many years ago now, I felt as if I had been hit by a train. I knew of no history of Huntington’s in my family, but I worked with people who were in the very late stages of Huntington’s, so I knew what it meant for my dad and possibly for me. 

You may have heard people being described as like a rhino or an ostrich, when they get bad news. They either charge right in, going into problem-solving mode and tackling it head-on, or they bury their head in the sand and ignore it (perhaps hoping it will go away).

There are pros and cons to either approach. I took neither: I was a woodpecker, fruitlessly tapping at the problem. Part of my mind was always thinking about Huntington’s, always watching out for symptoms. I would experience a random muscle twitch, or someone’s name would escape me for a moment, and a little doomsayer in the back of my mind would nod solemnly and say “well, that’s that then - you’ve definitely got Huntington's disease”. And then I would worry, and worry, and worry. This is what we talk about therapeutically as “dirty pain” - the idea that while some suffering is inevitable in life (being at risk of Huntington’s, for example), we can cause ourselves huge amounts of unnecessary additional pain by endlessly circling around a problem.

One example of this sticks in my mind. My close friend and I went to see “The Theory of Everything” at the cinema - with some trepidation, as I expected it to be a little similar to my family’s situation. For those who haven’t seen it, the film is about the life of Stephen Hawking and his diagnosis with a neurodegenerative condition. It showed, in a relatable way, Professor Hawking’s fear and distress as his symptoms worsened. After we left the cinema, I burst into tears and confessed to my friend that I had been experiencing occasional muscle twitches as I fell asleep at night, so I was certain I was gene-positive. My lovely friend told me, in the kindest possible way, that I was being ridiculous – their leg also sometimes twitched when they were falling asleep. I had been pecking away at something that was nothing. It was eight years ago; I am now certain that whether I am gene-positive or not, those long-ago twitches were definitely nothing. I had been “catastrophising” – deciding that the worst possible outcome of a situation was definitely going to happen. And it’s terribly easy to do that in relation to the risk of Huntington’s.

So, the landscape of Huntington’s can be dominated by worry. The other issue towering over that landscape is grief. That grief may be for loss that has already happened, or for anticipated future losses. People from families affected by Huntington’s will almost inevitably have seen a loved one develop symptoms, or even die. There may have been other impacts as the person’s symptoms progressed – necessary house moves due to changing finances or changes in occupations, loss of friends or enjoyed activities, and effects on relationships.

There is also anticipatory grief, for people who carry or may carry the gene for Huntington’s. We think about how the future will look; we may spend more time thinking ahead than living in the present. We might reconsider goals that we once had, or drop them altogether. I have worked with people who decided on a different career than they would really have liked; who decided not to buy a home because they did not expect to work for long enough to pay off the debt; who decided not to have children because of the risk of passing on the gene. Those decisions are incredibly tough, and people make the best choices they can in a difficult situation. Every one of those decisions meant loss of something important to the person, something they deeply wanted, and something they grieved for. 

To draw on my own experience again, a very painful thought for me is that I may lose my ability to work as a therapist and researcher. I value my work enormously for two reasons: first, that I can make a positive difference for people in a small way; second, that I enjoy the challenge of interesting and complex work. I bitterly resent that this may be taken from me. I won’t pretend that my therapeutic experience removes the sting from that potential loss – I have learned to be better at coping with how it feels, but it is never far from my mind. What I can say is that practicing what I preach has helped me to live alongside the fear and grief, and to live a life that feels meaningful and whole to me.

So having spoken about the difficulties of living with Huntington’s, I also want to talk about living as well as we can alongside them. To my mind, three things are important. First, we need to disentangle ourselves from being a woodpecker, worrying and worrying about the worst case scenario. It is far easier said than done. Mindful exercises around noticing and stepping back from our emotions are known to be effective, helping us to stop that “catastrophising” in its tracks, but it takes practice.

Taking care of ourselves and noticing the things that trigger anxious thoughts is also essential – for example, too much caffeine, not enough sleep, or talking about particular subjects. Some of those triggers might not be avoidable (or might not be something we want to avoid), such as seeing a family member who has symptoms of Huntington’s. In that case, we can think about how to mitigate the impact of those triggers, such as by planning something engaging or relaxing for later that day.

The second important aspect of living alongside the risk of Huntington’s brings me full circle, back to my last blog post, and back to the idea of doing what gives life purpose and joy. We may feel defined by the presence of Huntington’s in our lives, but we don’t have to be controlled by it. Therapeutically, we talk about the idea of “finding what you value” – the things that get you up in the morning, and make life feel good and worthwhile. For me, two of those things are “making a difference for people” and “being challenged”, but everyone has their own values that offer signposts towards a life that feels fulfilling and whole. Thinking about what that looks like for you can help create a roadmap towards better wellbeing – not removing the distress associated with the risk of Huntington’s, but helping us to live better alongside it.

And finally, talk to people when you are ready. That might be people who are also affected in some way by Huntington’s; it might be therapists or advisers who may understand some of how you are feeling; or it might be people who know nothing about it. It depends what you need at the time. But there is some peace and solidarity to be found by sharing in a safe space, with someone who is willing to listen.

None of this solves the “problem” of Huntington’s, of course (for that, we must continue looking with hope to the medical and pharmacological researchers). But the therapeutic approach offers us hope of a different sort. It provides ways to live alongside an uncertain or troubling future, and to live life well in a difficult situation, without spending all our energy on a battle we can’t win. It offers, if not a solution, a better way forward.

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with our Helpline Adviser available to offer you support. 

If you would like to speak to one of our Specialist Advisers in your area. Please visit the support near you section of our website.