...but why fear doesn’t get to beat us

A guest blog from a clinical psychologist who comes from a Huntington's family, and who is living at risk. They have previously written about living well, the mental wellbeing impacts of living at risk of Huntington's, and the effects of stigma for Huntington’s families. This time, they are sharing anonymously about the fears that can come with Huntington’s, and how we can start to overcome them.

I always think of November as “Huntington’s month”, with national events happening for the Huntington’s Disease Association (their wonderful family weekend and annual meeting), the UK HD network meeting for clinicians and researchers, and the Scottish Huntington’s Association. I may have been at some of these. (I think my identity as a so-called “anonymous” writer is more than a little compromised at this point, but we’ll keep up the official facade for just a little bit longer… and to the steadily increasing number who are keeping my secret for me, love and thanks!)

While I was (maybe) at these events, I found myself thinking a lot about fear, and the way it can loom large for those of us living in the shadow of Huntington’s. It does this in a range of ways, too many to write about in one blog, but I want to think about some of them today – and some of the ways we can fight back.

I “know”, others don’t

We can become “hypervigilant” to potential symptoms of Huntington’s in ourselves, looking out for every little detail that could be a sign of things to come. This applies to people who are living at risk (like me), or gene positive and waiting for expected difficulties to begin. I find that I’m constantly watchful, constantly building little stories for myself. A bit of food goes down the wrong way – well, choking is a risk in Huntington’s, so I must be gene positive and my physical symptoms must be starting. I couldn’t call the right word to mind during a conversation –  so that’s obviously the start of memory problems. I tripped over my own feet? Clumsiness, definitely a forerunner of Huntington’s.

Now, like all the best horror stories, the reason these are so fear-inducing is that these stories could be true. I may well be unknowingly living out the first act of Huntington’s, with the physical, cognitive, and emotional changes that start to creep in with it. I find the (potential) latter of these the most aggravating, in terms of the self-doubt they bring. I worry when I get annoyed, anxious or upset, even when it’s a valid response that I would understand and fully support in someone else. I find myself looking to my husband to check whether it's “reasonable” for me to be irritated by things. (He will gleefully admit to being a grumpy old man before his time, so he’s very validating in these moments because he generally thinks it’s fine to be annoyed with everything!) I’ve heard innumerable similar stories from others in the Huntington’s community. And what kind of outrageous nonsense is it that we can’t be annoyed by annoying things, without questioning ourselves?

It's very easy to build ourselves a deeply convincing, and frightening story from small things. And it’s really important to be aware of this, because these stories that our minds tell us can start to impact on our wellbeing. We can start to treat them as if they’re definite truths, rather than possibilities.

And then our minds start to run away with us, thinking ahead to coming symptoms, care homes, and how the end may look for us (often informed by what we have seen loved ones go through). We know what’s coming. That’s often one of the biggest fears of Huntington’s – we’ve seen it. We know.

But the truth is, in this sort of situation when we’re building stories for ourselves based on limited evidence, we generally don’t “know”. We assume. And then it starts to hit our emotional wellbeing. So identifying the fearful stories that our minds feed to us, allowing ourselves to make a conscious choice which to accept and which to reject, is important.

I know, others mustn’t

I wrote about some aspects of hiding Huntington’s in a previous blog, so I won’t talk too much here about the more practical reasons that we fear others finding out about Huntington’s being in the family – impacts on work, insurance, mortgages, travel, many of the important structures and adventures of our lives.

But there are other reasons we keep Huntington’s secret. It’s hard to know when to disclose it as part of a romantic relationship: should we do it early, to avoid things becoming too serious beforehand? Or wait until later, when it might feel like a bit less of a gamble, but when it might also feel so much harder if the other person chooses to leave? I told my now-husband early on, giving him a chance to opt out if he wanted to; fortunately he didn’t. (I’ve also had an experience of that conversation going the other way, which was pretty rubbish at the time.) It’s really hard to decide when to have this conversation, as the outcomes can be significant, and we can’t take back the words once they’re out.

Telling at-risk children in a Huntington’s family is also a huge decision. This is one I don’t expect to ever have to make myself, so for that reason (and others) I don’t offer an opinion on the “right” decision – that’s different for every family, and it’s not right for someone to impose their own judgements on another. So because this is a personal blog, written without my “therapy hat” on, I’ll instead dig back into my own story. My dad started to change around his early 40s (and you can bet that’s increasingly on my mind these days, as my personal hourglass runs on). He became irritable and anxious. He was aggressive, at times. We clashed often. I didn’t understand why, because although my parents knew he was at risk of Huntington’s, I didn’t – I’d never even heard of it back then. So when my dad seemed to be permanently angry with me (sometimes reasonably, sometimes less so), I blamed myself. I carried that guilt with me for a very long time. Frankly, using the past tense (“carried”) there is a lie – it shaped me in ways that will hang around for the rest of my life. 

I’d like to think that knowing why my dad was acting that way would have made me more empathic and understanding (both to him and to myself). However, I really don’t know what the “right” decision would have been for my parents; I’m not sure there even is a “right” decision in this situation. Being in their shoes must have been extremely tough. The choice they made, to keep Huntington’s quiet, was – I believe – motivated by love and perhaps also a little fearful head-in-the-sand coping strategy (I say perhaps, my mum would say definitely). This choice enabled us all to live a relatively normal life for many years, which certainly wouldn’t have been the same if we had been watching for Huntington’s and noticing my dad deteriorating. And finding out I was living at risk even as an adult felt cataclysmic, so who knows how I’d have dealt with that as a somewhat chaotic teenager. On the other hand, if I’d known and accepted the presence of Huntington’s from earlier in my life, perhaps it could have been integrated less painfully than the shock discovery that ended up happening instead.

The bottom line is, I don’t believe there is any such simple thing as a “right” choice here, and this applies to so many decisions in Huntington’s. We can only do our best with the information we have available to us at the time, motivated by what’s important to us and what we believe to be right, and being kind to ourselves – remembering later that we made the best calls we could, with the information we had at the time.

What if others know, but I don’t?

As I approach the probable age of onset – if I’m gene positive – I’ve developed a new fear. I’m afraid of starting to develop visible signs of Huntington’s, without realising it’s happening. I’m genuinely more afraid of this than of developing Huntington’s itself. I appreciate this may seem odd. Let me explain a bit.

Many people with Huntington’s have some degree of “lack of insight”, which means either not being aware of the severity of their Huntington’s-related difficulties, or sometimes not being aware of those difficulties at all. I’ve known quite a few people – my dad included – who outright didn’t accept that they had Huntington’s, even when their difficulties had become very advanced. So for starters, we know it’s possible to be experiencing some significant Huntington’s struggles which are clear to those around us, but not to ourselves.

There are also subtle changes that come with the very beginning of Huntington’s. For example, we can get a little clumsy, make a few more mistakes, and our speech can get a little less well coordinated. Once you’ve been around people affected by Huntington’s for a while, these changes become easier to see. But it’s harder to see those changes in oneself, partly because of that potential “lack of insight”, and partly because when things move slowly and gradually, it’s hard to notice that change happening. I’m sure everyone reading has had the experience of meeting someone whom we haven’t seen for a few years, and realising that they look a bit older than they used to – but for the people we see every day, we don’t usually notice those subtle changes over time.

I’ve gladly poured my life into supporting people affected by Huntington’s, and I’ll continue to do so for as long as I’m able. But there is a fear for me in this idea that Huntington’s might sneak up on me, starting to enact little changes that people around me can see. It feels very exposing. I know I’m not alone in this; many people who carry the gene expansion have expressed to me that they hate the idea of people feeling sorry for them, and I feel that in my bones. Huntington’s is unfair, it’s unreasonable, and it’s downright awful a lot of the time. But none of that makes us from Huntington’s families weak or pitiable. Some of my greatest heroes are people who are gene positive or living at risk; I have met many such people over the last couple of weeks (and over the months and years before that). And these people are the ones who help me to keep plodding along, often without even knowing they’re doing it, on the days that feel hardest.

More than anything else, I’m grateful to be part of this community. Huntington’s brings fear, uncertainties, and some very difficult certainties – but it also brings us together with people who offer boundless hope and love. Together we are strong, and fear doesn’t get to beat us.