Clinical Psychologist, Dr Sarah Gunn answers questions from the community about mental health.
About Sarah
Sarah is a Clinical Psychologist, who has been working and undertaking research with people with Huntington’s for around ten years. She is also a Lecturer, helping to train new Clinical Psychologists, and she recently contributed to new national guidance from the British Psychological Society on psychological interventions for people with Huntington’s. Sarah is part of the “Psychological Interventions and Approaches Working Group” for the European Huntington’s Disease Network, which is a specialist group working to develop ways to support people with Huntington’s disease.
What are some effective ways to manage mental health?
There are some videos and webinars from the Huntington’s Disease Association which talk about this in quite a lot of depth – perhaps more than you were asking for! But I think it’s worth offering in case you’re interested in watching them. Here’s one I did a little while ago, about psychological strategies for looking after yourself when affected by Huntington’s, and I’d hope that might help to answer your question. The brilliant neuropsychiatrist Dr Akshay Nair has also provided a webinar on mental wellbeing difficulties and treatments. I hope both of those are helpful.
There are also some wonderful videos put together by the Huntington’s Disease Association, such as their guided relaxation scripts (imagining yourself walking through a forest or on a beach). I’d add to those a wealth of useful videos on YouTube. Here are some of the examples I like to recommend to people:
- There is a great “square breathing” example. This can help you breathe slowly and deeply, and establish a calming rhythm when feeling upset or stressed.
- This five minute “here and now” exercise can help to ground you, focusing you on your surroundings instead of being captured by difficult thoughts and emotions.
- And finally, this peaceful little animation takes you through my personal favourite, “leaves on a stream”, where you aim to let go of difficult thoughts and remind yourself that they are only passengers, and not part of you.
My earlier suggestions in the replies above also apply here, about seeking safe places to talk, and support from therapists, GPs or Huntington’s specialists. You might also be interested in learning a bit more about the kinds of talking therapy which I feel may be helpful for people affected by Huntington’s. If that’s the case, there is another article that you might find interesting.
Is it normal for someone with Huntington’s to go into a mood over the slightest thing? e.g dropping food?
One of the things that many people experience in relation to Huntington’s is “irritability”, or what could be described as seeming grumpy or bad-tempered. It can be quite a big change from how someone used to be, and it can come as a bit of a shock to their loved ones. The person with Huntington’s themselves may also be surprised and upset to find themselves behaving differently to how they used to. Quite often, people with Huntington’s will talk about feeling guilty and unhappy that they have (as they see it) “lashed out” at family members.
Part of this is likely to relate to Huntington’s-related biological changes in the brain. People can find it more difficult to “inhibit” or push down their reactions in lots of different ways. So while in the past, they might have felt annoyed when something went wrong but controlled the impulse to snap or become angry, now they might not be able to control that reaction in the same way.
Another important thing to consider is the impact of stress and difficulties in everyday life. Huntington’s isn’t just about biological changes; it comes with a whole raft of complications (as readers will already know very well). And we know that people who are under stress and juggling lots of difficult things are far more likely to become irritable. People in Huntington’s families, with or without the gene expansion, may therefore become more unhappy, more stressed and more irritable due to experiencing an upsetting and difficult situation.
In short, this is certainly a common experience among Huntington’s families – but it being common doesn’t make it easy to cope with. Some things to consider might be contacting your Huntington’s Adviser for a discussion, seeing if there is a support group nearby (or one that meets online) for moral support, or potentially discussing routes to therapy or perhaps helpful medication with your GP or Huntington’s service (if you have one). You can find more information in this HDBuzz article.
My son feels abnormal to his friends and like he cannot get into a relationship because who would want him with this, he thinks he'll never have children and may die at 50. How can I support him as his mother?
From my clinical work with people who have Huntington’s, this is a really common and understandable worry. Relationships are already complex, and dating seems even harder than it used to be these days. While you don’t say how old your son is, if he’s a younger chap then there are also the anxieties and stresses of being a young person and wondering how you will find the right person for you.
Huntington’s makes all of that feel a lot more complicated, for good reasons, and yet I don’t think the outlook is as dark as all that. I think perhaps the best argument for a more optimistic perspective is the many wonderful stories I have come across of people with Huntington’s who are married or have long-term partners, who have had children, who have wonderful people in their lives who stand by them in the difficult times. This isn’t the case for everyone, and I don’t want to paint a glowing picture and dismiss the difficulties, because that wouldn’t be true or helpful. But if I wanted to convince a young person that life and relationships can still be rich and wonderful while living alongside Huntington’s, then I might suggest getting your son in touch with the Huntington’s Disease Youth Organization. This might be a really nice way for him to meet some people who have had, or are having, positive experiences of relationships that he can look towards for reassurance and encouragement.
How do we deal with the questions of the future, long-term depression and uncertainty?
This is a big question, isn’t it. Living with Huntington’s (whether as a person with the gene expansion or without it) is really tough, especially the uncertainty. In the “Acceptance and Commitment Therapy” courses that I run with the Huntington’s Disease Association, we speak early on about the Sword of Damocles. This is an ancient Greek legend about an adviser who traded places with a rich and privileged king, because he could see how the king enjoyed his riches and fine food and wine, and the adviser thought what a wonderful life this must be for the king. The king suggested the swap, because he wanted the adviser to understand that while he had all these fine things, he was always at risk of losing them. To do this, he allowed the adviser all his wonderful fine things, and allowed him to sit on the throne and be king. But the original king also tied a sword to the rafter above the throne, suspended by a single horse hair. It could drop at any moment, and the adviser would be killed. The adviser tried to enjoy his fine food and wine, and all the trappings of power, but the threat of the sword possibly dropping was just too distracting and he quickly asked to resume his usual role.
The reason we talk about this legend in therapy, is because people with Huntington’s often really relate to the sense of uncertainty and fear for the future. I know I’m preaching to the choir when I say that it is extremely hard living with not knowing when and how the time will come. This can have really understandable impacts on mood, worry, and motivation – of course it does, and no one could be blamed for that.
However understandable it is to feel that way, though, it’s also important to recognise when we need to ask for help. There are a few places you could look. There are the wonderful Huntington’s advisers, as I’ve said in a previous reply, and there are the local support groups which provide such valuable contact with people who understand. There are also the “Keeping Yourself in Mind” courses, which I run with the Huntington’s Disease Association, and we know from feedback that many people find those very helpful for exactly the kinds of difficulties you’ve described. Finally, you may also wish to explore the possibility of medication or therapy with your doctor. I always think it’s a good idea to explore all options, so you can choose what makes most sense for you. And please remember that asking for help is a sign of wisdom and strength, not weakness.
How to cope with survival guilt?
This is a tricky thing to cope with. I’ve met a lot of people who have experienced survivor's guilt in relation to Huntington’s; a common example is among siblings, where one has a positive test result and the other does not. For a person who tests negative for Huntington’s, people often assume that they will have a happy and relieved reaction (and you can sort of understand why they might think that). But research shows us that even if you get a negative result, you are likely to still go through a rollercoaster of emotional responses after that result – and of course this is even more true if a sibling or another family member has tested positive.
People experiencing survivor's guilt may have a range of difficult thoughts and feelings. They might feel that it is somehow their fault that they have “escaped” while another person did not. They might feel as though they have done something wrong. They may feel guilty or ashamed that they are in a better position than someone they love – perhaps some of this sounds familiar to you, or to others reading. These thoughts and feelings can have serious impacts on mood, with people feeling low, anxious, irritable, and unable to stop thinking about it all.
There are a few ways that you might consider dealing with survivor’s guilt. You might consider talking to family about how you feel (perhaps not the person who had the positive result, if you have someone particular in mind, but it could be an option if you have a relationship with them where that feels possible or helpful). Alternatively, you might consider seeking talking therapy through the NHS, through charity organisations, or privately if that’s an option for you. What’s really important is not to isolate yourself or keep those thoughts all to yourself, no matter how much you might feel like it at times. Reach out, and talk to someone.
You may also benefit from some mindful exercises, focusing on acknowledging your emotions and thoughts but not being overwhelmed by them – this takes practice but it’s a very helpful skill to develop. People also say that it can help to give something back to the community and to do some good, reminding yourself that you are valuable and that you can help others through being here. I think doing things you value and believe in are inarguably good for mood and wellbeing, but I think that the crucial thing is reaching out and speaking to someone, and this could be a nice extra option if it feels as if it might suit you.
Our local mental health community team don't feel Huntington’s patients come under their category. How do we improve this?*
This is a really good question, and one that is close to my heart. Unfortunately, first of all I think this is something that will be hard to change at a local level with your specific team. Teams are very often over-stretched and under-staffed, and this can lead to access rules being tightened and ultimately to people with Huntington’s (and other difficulties) missing out on care and support. I wish I had a good answer to how we address this. At the moment, the best I can say is that I have spoken to many brilliant and passionate people in the Huntington’s community who know this is an issue, and it’s one we’re all determined to fix. For example, I’m one of three people leading a study of mental healthcare for people affected by Huntington’s in England and Wales – we are looking at how people with Huntington’s and from Huntington’s families experience mental healthcare, what works well, and what doesn’t work so well. This study has been very kindly funded by the European Huntington’s Network and the Huntington’s Disease Association are supporting us with carrying it out, which again I think illustrates that this is a known issue that people really want to solve. I’m hopeful that our findings will provide information and leverage to the Huntington’s Disease Association to support their campaigning at higher levels, to create meaningful change for people affected by Huntington’s.
*Since these questions were answered and thanks to our mental health campaigning, this has now changed. Thanks to the incredible voices of our community, we are delighted to share that NHS England has listened and change is happening.
We’re pleased to share that NHS England has now added to their guidance on adult and older adult mental health services to make clear that mental health services shouldn’t exclude anyone because they have a neurological condition, such as Huntington’s disease.
How does Huntington’s disease typically impact mental health?
I’ve written a blog for the Huntington’s Disease Association about this in the past, which I hope you’ll find helpful if you’d like to read it. This article discusses how Huntington’s affects people across Huntington’s families, with and without the gene expansion.
I hope that this is useful in terms of describing the general difficulties that people affected by Huntington’s may encounter. However, I’d be remiss not to say a bit more. I’m also a big advocate of a stolen phrase. A chap called Dr Stephen Shore once said “when you meet one person with autism, you’ve met one person with autism”. I really think this is just as true for Huntington’s. There are characteristic difficulties with mental wellbeing which may come with Huntington’s as it progresses, and there are certainly mental health difficulties linked to Huntington’s which are more common than others. But how they occur (or don’t) and impact on people at least somewhat depends on who that person is, their situation, their strengths, the people around them, and the ways they learn to cope. So my corruption of Dr Shore’s famous phrase is: “when you’ve met one person with Huntington’s, you’ve met one person with Huntington’s.” And healthcare professionals, therapists, whoever, must always take the time to know the individual, as well as knowing the common difficulties.
Thank you Sarah for taking the time to respond to our questions from the community.