Unleashing the genie

Sometimes I wonder why I'm writing this, and who for. If you are affected by HD yourself then this is surely all stuff you already know. And if not, what sort of ghoul are you for reading someone else's misery memoir?! No, no, I don't really mean that, honest, please do keep reading.   

But what good does it actually do to talk about HD? 

For one thing, it will I hope make people more sympathetic - and more accepting. Because although this still classifies as a "rare disease", you just never know. That malodorous man lurching towards you at the bus stop or in the supermarket queue might be slurring his words because he has HD. He might smell of booze and wee and something worse; he might look as if he's slept in his clothes and it’s easy to assume he’s an addict or a street drinker, wrinkle your nose and move well away. But his trouser buttons could be done up wrong because he has HD and can’t fasten them himself and forgets to do it anyway.

The woman making a scene in the cafe who knocks a plate of food onto the floor then scrapes back her chair with excruciating screech, her voice rising into hysteria – for all we know she might be agitated because of HD. Again, there are all sorts of things we can assume about her and the British reaction is usually to avoid eye contact and get well out of the way. 

HD is ugly, embarrassing, distasteful and frightening to watch as it gradually takes over the mind and body. 

It makes you behave in odd, sometimes unsocial ways. You will be sweaty, jittery, whack out with your arms and legs and sometimes hurt someone. You may have car accidents and go into furious rages with other drivers. You lose inhibition and often a sense of personal hygiene. You miss your mouth with the fork and send the sausage flying across the room when you try to cut it with a knife. You will lose the thread of what others are saying, won’t really care anyway, obsessing over the same issue again and again until people get fed up and even start to avoid you. Or you might suddenly become catatonic, staring at the TV for hours on end, drinking. It messes with your meds but it’s one thing you can still do and by golly it helps blur the edges a bit.

By the time HD typically develops in mid life, people have often established a career, have family, home, financial and social responsibilities so it affects not just the sufferer but a whole network. 

In some ways it’s similar to dementia, hideous and unknowable, except that we seem these days to have a lot more understanding of dementia.  
And of course with HD there is the hereditary factor. 

You've probably come across the notion of Magical Thinking. The idea that if you pretend something doesn’t exist it will go away. Well, this is one of the things that has kept HD hidden for generations.

One of my oldest friends from school married a man who went on to develop HD. His mum had it, and one of his cousins. So he must have known what it was and that they were all at risk, and yet it was simply never mentioned until much much later when he started getting ill. By then they had three children, who are now all young adults and very much at risk themselves. He died a few years ago while they were all still teenagers. 
My friend nursed him, mourned him, coped amazingly well. Yet even now, having been through that, having known each other all our adult lives and shared the same ghastly coincidence of being affected by something so horrible but so uncommon, she is very reluctant to talk about it with me.  

I’ve spoken to other people who know they are at risk but whose families refuse to discuss it, as if just bringing it out into the open will unleash the evil genie. 

It's all very well for me, you might say: I know I'm in the clear and don't have to tiptoe around the subject, always waiting for the axe to fall but shoving those thoughts to the back of my mind, not talking about it in case it tempts fate. 

But those of us in the clear are still affected to the core. We still know more about the illness than anyone really ought to or wants to, and who else can bring it to attention if not us? 
Do we really want to continue the generations of silence, stigma and shame for our loved ones? 
I think the only way to banish that genie is to show it some daylight.