A guest blog from a clinical psychologist who comes from a Huntington's family.
They are sharing anonymously about their thoughts on death and suicide, and why these need to be openly spoken about in the Huntington’s community.
Today, I want to talk about death. It’s not a nice subject, but for people and families affected by Huntington’s disease, it’s a common one - whether we say it out loud, or only think about it for ourselves. I will be talking about death and thoughts of suicide in this post, as well as mentioning a recent bereavement of mine, so please be kind to yourself and only read it if that feels all right for you. Remember you can always come back later if now isn’t a good time.
In my personal and professional life, I have met quite a few people who carry the gene expansion for Huntington’s disease, who have spoken about or considered the idea of ending their life.. By 'considered', I don’t mean planned it or tried it, although some have. I mean that people have thought about whether it’s an option they might, at some point, consider taking. Charlotte Raven is a wonderful writer whom many of you will have heard of; she has spoken about thoughts of suicide openly in context of her experience of Huntington's disease, and I admire her enormously for it. As a person at risk, and as I watched my parent with Huntington's disease become increasingly unwell before their death, the thought of whether it’s an option I would consider has come to me too. Not now, not soon, but one day – maybe.
This subject carries all kinds of hugely difficult emotions; it’s hard to write about, and no doubt may be hard to read. Nevertheless, I thought that this is an important subject, not least because it’s one which often isn’t spoken about.
People who have had thoughts about ending their life, whether they intend to act on them or not, can feel guilt, shame, or worry about what others will think of them. It can be very hard to speak about these thoughts, and it can feel very isolating. But this is why it’s so vitally important to bring these conversations out of the shadows and talk about them openly.
In my opinion, and that’s all it is as I’m writing in my personal capacity here, we shouldn’t treat it as inherently shameful to have had thoughts about suicide. I also believe that there should be no shame in a person choosing to end their life, if (and only if) it’s the right choice for them. 'Choice' is the most crucial word in that sentence. For some people with Huntington's disease, it may feel like a choice they want to consider. For others, it will be unthinkable. Some people may hold beliefs (religious or otherwise) that it isn’t acceptable for a person to choose to die. Others may be hopeful of a future breakthrough to slow, halt or even undo Huntington's disease. There is no right answer to this question: it might be the most personal decision a person can ever make, and there is only the right answer for each individual person.
I often find value in referring to wiser heads than mine. In this case I want to draw on the wisdom of one of my personal heroes, Sir Terry Pratchett. For any who aren't familiar with him, he was a brilliant, satirical journalist and novelist, diagnosed with young onset Alzheimer's disease far too early in his life. In some ways, there are resonances with what those of us from Huntington's disease families go through. He wrote about the distress, the resentment, the sense of injustice and of lots of important things taken away far too soon. He had a loud and powerful voice due to his line of work, and he used it to speak strongly in favour of the 'right to die'. There are increasing voices in the media beginning to call for this right currently, and I believe that in time, we will have the option (if we want it) to choose a kinder death than the ones we have access to at the moment. As Sir Terry once put it, that way “the enemy might win, but it won’t triumph”. But again, the key word is 'choose'.
Another reason that now felt like the time to write this particular post, is that my parent with Huntington's disease died very recently. I strongly suspect it will surprise no one reading that there is a large dose of relief mixed in with the profound sorrow. My father was fiercely independent and valued self-reliance above almost anything. I’m very proud of him and who he was. As his Huntington's disease progressed, he needed more and more help, and anyone in our family could tell you how much that would pain him. Huntington's disease is cruel, and he was suffering by the end. I truly believe that wherever he is now, he is thinking “thank goodness that’s over”. And I believe that if he had had the option to gracefully bow out sooner while he still had more of his independence, of himself, he might have considered doing so.
As I’ve said though, that isn’t the right choice for everyone. Depending on your personal values, the right answer for you may feel obvious (in either direction), or may be less clear.
For me personally, there’s a lot of my dad in me. If and when the time comes, if I feel I’m losing myself and my freedom to an unacceptable degree, I hope to have the freedom to choose. However, if there is the option to choose, all options must be supported equally: each person being free to choose to live or to die, depending on which feels like the 'right answer' for them. And I think it’s crucial to any consideration of this that we feel safe to talk about it.
So if you are thinking about death, if you're thinking about these choices, don't think about it alone. Talk to someone. Family or friends might feel difficult for obvious reasons. But there is the Huntington's Disease Association, there are organisations like the Samaritans, and there are anonymous online forums where you can tell all without anyone knowing who you are.
Choose your forum with caution, of course, as the internet is not compassionate in all corners. But talk to someone. Sometimes just sharing your thoughts is all you need; sometimes you might still be thinking afterwards. Either way, there is nothing to be ashamed of.
As a closing thought, in honour of my dad, I'd like to link you to this hopeful and (I think) beautiful poem by James Robertson: 'The Bird that was Trapped has Flown'.