Guest post: Living with Huntington's Disease
Charlotte Raven reflects on how her life has changed since being diagnosed with HD, and where she's going next.
Living with Huntington’s Disease
Posted on: Tue 17-Oct-17 16:35:59
(34 comments )
I have Huntington’s disease, a degenerative neurological illness that typically manifests in mid life. I’m 48. I’ve been symptomatic for the past eight years, deteriorating slowly, with less and less to do.
My friends are all busy juggling jobs and young families. Their lives look enviable from where I’m sitting. My life is becoming ever more constrained. I really don’t have much time left, but I need to be realistic about what I do with it. I can’t take off on a Triumph or flee the city in search of a more authentic off-grid existence. I want to spend more time with my children so I’m picking them up from school while I still can. My carers cook for us all, I can’t multi task, but the school run is still challenging. My nine-year-old son’s school is 10 minutes walk away but I’m often late. If I am there early, I look at my phone rather than talk to anyone. HD makes everyday interactions difficult. I find the melee at the school gate tricky to navigate; I can’t seem to make the right expression or even remember who his teacher is. Yesterday morning, I went to the school office to pay his dinner money and I didn’t know what class he was in. My HD brain is like Teflon.
The headmistress knows about my condition and I’ve only told a couple of the mothers, but they have been very supportive. Once in a while, when it’s not raining, I go to the skate park for a moan with a depressed mother who is a ‘stuckist’ artist with a spiritual side.
When we get home it’s hard to think of creative things to do with my son J. I can’t make fairy cakes, or understand the rules to Labyrinth so J plays this two-player game on his own. We used to have a child minder who was a beacon of positivity. J really misses her.
My life is becoming ever more constrained. I really don't have much time left, but I need to be realistic about what I do with it.
I really miss the collaborative projects that made me feel most myself. The cruel thing about HD is that it impairs quickly but takes years to dispatch you. I can’t read or think clearly, or get to meetings on time. My brief run as editor-in-chief of an online feminist magazine ended as it had begun - in stressed out sleepless nights and self -recrimination. My colleagues knew about my condition but called me out for my unprofessionalism. I’ve had to scale back all my work commitments but I’m hoping to see Feminist Times 2 rise from the ashes as a print publication in March. This time, my role is consultative, and I have been clear about my limitations. My daughter will be pleased if it comes back as her perspective was always valued. She misses the personal and political conversations around my kitchen table.
On the bathroom wall, there are painful reminders of past times that I can’t bring myself to take down. Unfairly, I am competing with my former, pre-HD self. There are framed pictures of Liam Gallagher and Tracey Emin’s unmade bed. I’m so glad I was young in the nineties and early noughties, when watching Big Brother was anthropological not voyeuristic. I was briefly a columnist for The Guardian, I’m proud to say I hated Tony Blair before it was fashionable. I did repeat myself though, it’s hard not to. Bored of the sound of my own voice, with nothing left to say about The Spice Girls, I gave up my column to write a book.
At the best of times, writing is isolating. I have an office in the garden with no wi-fi away from the family. I never go in there though. The bottom of the garden still feels like a long way away. So I work in a room next to the kitchen where the comings and goings of my children are a reassuring background hum. Even when the noise is amplified Spotify playlists, I still prefer it to silence.
People keep saying: “are you writing?” and, “what are you working on?” I regret not finishing my book. My carer helps me with my blog. I have never blogged before but the form really suits me as I can shoehorn it in between the endless appointments and picking up the children.
There are support groups for people with HD but they only meet once a month. Should I volunteer? Or join Class War? My dear friend Murray brings me anarchist literature whenever he visits. Opposing social cleansing certainly keeps him busy. I went to one of their actions outside the offices of Zaha Hadid. He is too cool to have a mid life crisis, but he is always reinventing himself. I am inspired by his example.
Charlotte blogs about living with Huntington's Disease on her blog here
By Charlotte Raven
You're an inspiration and you'll make your children proud everyday.
Always a surprise to see HD featured in mainstream media, but a bittersweetly welcome one. So many don’t know about it.
My father has HD; my only sibling and I were incredibly fortunate to test negative.
By the time my dad was correctly diagnosed and HD came into our lives, he’d been symptomatic for several years. We’re not sure how much of it all he really understands now, let alone then. It’s twee and patronising and I’m sorry but I genuinely have a lot of respect for your strength. Having faced down it while awaiting testing, I don’t know if I would have been that strong. Your children have an excellent example in you.
HD is indefinably and sickeningly cruel.
Thank you for sharing. Hugs to you and yours x Be kind to yourself.
What a crap thing to happen. Keep writing , you’re very good at it.
I used to support a woman with Huntington’s disease.It’s great to see it and the issues around it publicised this way-awareness needs to be raised-but from the bottom of my heart I’m sorry you are having to live with it. Much love to you and to your family op.
This post led me to your blog. Thanks for posting and sharing your experience.
Inspirational and beautifully written.
DH has just discovered that HD is in his family. He's about to start counselling in preparation for being tested.
I'm frightened to think about what might lie ahead for him and for our DC.
I wish you well, OP. Thank you for sharing.
I have hd as well got diagnosed in Feb and have an 9 year old son and 13 year old daughter
I am in the early stages x
So sorry to hear of this and with best wishes to you- very pleased that you are still writing.
Everytime I read the words HD my stomach flips. This time last year I have never even thought about it other than a brief storyline on casualty years ago.
My dad has HD he was diagnosed in March this year but a consultant put 2+2 together last November and flipped out lives upside down.
I am sad to read your story since finding out the news I read a lot about research and have great hope that a treatment and eventually a cure may soon be found.
I’m 39 years old and haven’t tested yet but am considering starting the process next year after my 40th. My dad developed the disease fairly late (he is now 70) but there has been noticeably something wrong with him for three or four years. He is trying to make the most of life.
My dad has 6 brothers and sisters and my mum had to break the news to them all some have started the testing process. I have lots of cousins who also have children like me I’m not sure if they all know yet. So many generations potentially affected. It felt like a bomb had gone off in our family when we first found out but live must go on and I’m bogged down by daily dramas of having two young children but it is there like a black cloud hanging over me.
It can feel quite isolating as it’s one of those diseases you don’t hear about and there is a secretiveness about it (my children don’t know and I don’t know how to attempt to discuss it with them)
I’m pleased mumsnet have put a guest post on this and I hope it spreads awareness.
Sending you love and best wishes do you have a link to your blog.
I have been tested and carry the mutation, from my Dad. he is the first known case in our family and was diagnosed at retirement. I have young children and hope to remain clinically asymptomatic for as long as I can. I know I have no control over when it knocks on my door and I hate it.
Thank you for educating me, and opening my mind to something I knew nothing about in such a well expressed and inspiring post. Sending my very best wishes to you.
Thank you for posting. HD is such a cruel condition and isn't as well known as it should be. Your writing gives a great insight into the realities of living with the condition, something that I have sadly seen family members cope with as best they can.
For me, the biggest cruelty is that it the symptoms of the disease so often don't appear until people have had children and then one has to face the idea that not only you have it yourself but that the defective gene has already been passed to the next generation.
I was tested earlier this year and, thankfully, although not completely clear the test came back with a 'hypothetical' risk as the length of the HD gene was in the indeterminate area, something that I wasn't aware existed.
I thought that facing up to the possibility of a positive test was one of the hardest things that I have had to do. I admire your fortitude in coping with this and wish you the greatest of luck over the coming years.
My cousin died from Huntingtons at only 24 years old. He was symptomatic from the age of 15 yet they wouldn't test or diagnose him as he wasn't 18, despite their being an extensive family history, crazy!
Well done you for giving it the publicity it needs. So many people have never even heard of it.
Thank you so much for publishing this. My partners sibling is dying now with HD and my partner watches himself for symptoms constantly. He refuses to get tested and it is his decision. My thoughts are with everyone affected by this terrible condition.
There is far too little awareness and discussion of this and so many other similar conditions. I'll admit that I know very little about the disease other than when it's been portrayed on television.
Wishing you and your family every strength for the journey ahead x
Thankyou for sharing with us and I totally enjoyed your writing style. You must be an inspiration to your family. Xx
You sound lovely and doing amazing.
My mum had a friend who had Huntingdons and sadly her husband died in an accident before she did. They had two lovely kids and we don't know what happened to them as they went to live with a family friend and never saw them again, I often wander about them and how they are.
Hi Charlotte. I’ve worked with people with Huntington’s disease for the last 12 years and am just so glad to see someone writing about what it’s really like to live with this condition. People concentrate so much on the movement disorder so that the changes to thinking get ignored. You describe it so well.
This was just heartbreaking to read. I was always in awe of you in the 90s- and you obviously still are pretty tricking cool!
Sorry my auto correct stopped me swearing :-)
Foolishly I didn't know women could get HD. Sorry you're going through this, it sounds very painful.
Going to read more about the condition now.
What's the blog please??
Yes please what is the blog. I've worked with people with hd, both young and old. I'm now a student nurse and feel this is the area I would like to work in.
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