Huntington’s Disease, Christmas, And Me


I wish I really loved Christmas. I wish I could see it as a magical time. But if I’m being honest, I don’t. I put on an excellent show and I have my moments in the bauble section at my local garden centre, but it’s more of a manufactured love rather than something authentic.

We do the whole shebang — the tree, the fairy lights, the turkey and all the trimmings. But it isn’t a true excitement I have for the holiday season, and sometimes that makes me feel sad.

On the positive side, at least through my work I understand the reason for this. All my formative years were spent living in the shadow of Huntington’s Disease. My mother was showing symptoms when I was a young girl and this continued through my teenage years. For those of you that don’t know, Huntington’s Disease is like having Schizophrenia, Motor Neuron Disease, Autism, and Parkinson’s Disease all at the same time. The disease not only has a deep impact on those who suffer but the symptoms affect the entire family. It truly is an awful, debilitating, and demoralising disease. So, this meant that Christmas in our house was far from merry, and some of my worse memories are brought up at this time of year.

Why am I writing this? Because I want to help other people who feel the way I do.

You see, I know I am not alone in putting a brave face on at Christmas (and I’m not just talking about the experience of those who live with Huntington’s Disease in their family).

There are many reasons why a cloud can hang over the Christmas. The death of a loved one during a previous Christmas can leave families feeling guilty about celebrating; people who are left on their own at Christmas grow to dread this time of year; and then there are those who have had their lives turned upside down by redundancy or some other unforeseen event.

And yet people are forced, in many ways, to feel guilty about not feeling Christmassy – purely because we are surrounded by commercials playing out an endless loop of happy families, Santa sacks, and Christmas trees.

This only makes it harder, as the perception of what it should be (and should feel like) widens the reality gap for those who don’t share the positive experiences that Christmas is ‘supposed’ to be about.

I oscillate between wanting to create the perfect family Christmas I never had, and wondering whether we could just jump on a plane and leave before it happens and come back afterwards. There are many people who also experience this dichotomy, fuelled by the idyllic version of what Christmas should be like and the reality of what they experience. There were years when I never felt as lonely as I did at Christmas time, even if I was surrounded by people — it makes no difference if it’s not a happy house or you aren’t with the people you want to be with. I had years growing up where I was a ‘window gazer’ on other families’ Christmas days and all it did was make me feel worse, and for a couple of years I spent Christmas day entirely on my own.

Don’t get me wrong, I am so very grateful for what I have. We have a wonderful family unit: we celebrate, watch TV, eat chocolates, and do battle with the wonderful Norfolk Black turkey which we always buy from the same place every year. And I am fortunate that I can do that with the people I love.

If you struggle over the Christmas period here are some things that you can do to make it a little easier.

  • Maintain perspective. TV, shopping and all the paraphernalia that comes with Christmas is commercial, and it’s there to hype people into a buying state (physically and mentally). Enjoy the lights, enjoy the music but remember it gets wheeled out every year for the same purpose: to sell things.
  • Don’t feel that everything has to be perfect. Sod the orange-and-star-anise-cooked carrots — make it easy for yourself, as at the end of the day it’s just another roast dinner. Enjoy the eating not the preparing!
  • Keep it authentic. If you don’t want to go in for all the present-buying, don’t. Decide you are going to keep things simple and have experiences or make memories with people instead. You are in control of what you do, so don’t get swept along.
  • Remember, it’s only a couple of days. If you’re going to be on your own, get out and go for walks. Pubs are usually open on a lunchtime on Christmas day — grab a paper, a seat near the fire and your favourite drink….enjoy the community spirit, if nothing else.
  • It’s just a passage and chapter of time. The new year comes quickly so start thinking about how your life is going to look next year and what you are going to stop doing, keep doing and start doing more of!
  • Try not to dwell on Christmases past. Live your festive season in the present.

I wish you all the very best for a perspective-fuelled festive experience!