Huntington’s Disease can affect people in many different ways, and it certainly affected my life in a big way.
Everyone affected by Huntington’s Disease has a story, some are similar and some are very different, everyone has different stories, experiences, and as we all know, Huntington’s disease is different in each person.
After many years of coming to terms with Huntington’s Disease and the impact it has on my life, I truly do believe that the best thing I can do is raise awareness, talk about Huntington’s and try to reduce the stigma of Huntington’s. I believe this is my way of turning something that is and can be very negative in my life, into a positive. There is an awful stigma around Huntington’s disease, where people are scared and ashamed of what others will think. I believe reducing the stigma and talking more about HD is the most important thing we can do, people and families should not feel ashamed about this disease, children should not wonder if their friends will understand and HD patients should not feel ashamed of the genes!! Something none of us can control!
I want to share with you a brief history of my life, and hopefully share how speaking out about this has helped me over the years.
When I was around 14 years old, my Dad was diagnosed with Huntington’s, and sadly our relationship was broken at the time. We had gone from the typical Daddy-daughter relationship to not even talking I was getting the brunt of his anger which was caused by the disease. Fast forward three years and at 17 I became a carer for my Dad, his fiancé left him, and he needed help with daily tasks. My brother Ryan and I rallied around with my Mum (Dad’s ex-wife) and got him the care he needed. We arranged for care assistants to visit him daily and my brother and I divided up the other tasks. At this point I was able to manage on my own, so my brother wasn’t needed as much, but as the illness took over my dad, Ryan stepped in more and more to help me. We became a team, sometimes a dysfunctional team, but we always had Dad’s best interests at heart.
At the age of 18, I was obsessed with being tested for Huntington’s, and to be honest from the age of 16 – 18 I thought it was unfair that they made you wait until 18 years old to be tested. I started the testing process, and after several appointments and months of upset, I decided to pull out before blood was drawn. This is a whole story in itself, but let’s just say 10 years on, I think it was the right decision for me at the time. I am at peace with not knowing and one day, when I find Mr Right, and decide to settle down, I will get tested. For me, children are a huge thing, and getting tested and children for me go hand in hand. This is a personal choice and I know everyone is different.
Over the years, dad and I fought, I cried, he shouted, we both laughed and took A LOT of selfies. It wasn’t always easy and there was a time where I was juggling A-levels/university, volunteering, one or sometimes two jobs, caring for dad, and my own personal social life. It was a balancing act and I didn’t always get it right. I was late to appointments, I forgot to bring his list of medication, I missed friend’s birthdays. Sometimes I didn’t have enough money to bring Dad somewhere and hang out with friends, so I let my friends down. I sacrificed a lot, missed out on some things, but always managed to get through the tough days!
My brother and Mum made it possible for me to attend university which was two hours away from Dad. My brother and Mum made it possible for me to travel to America for two summers to work at a summer camp teaching watersports. Friends and other people in our local community made it possible for Ryan and I to continue our education and get a break, helping Dad with small tasks. Simple things, when Dad would walk the minute to our local shop, they would deliver the large bag of dog food to his house, instead of having him carry it. If dad left money behind at the local pub when he had enjoyed a Friday night meal, they would call and let us know. Certain members of our local village community kept an eye on Dad when Ryan and I weren’t around.
Every Huntington’s story is different, some families have wonderful support systems, some don’t. Some families have a lot of help from their medical team and some struggle to get a social worker. Luckily, we have a good medical team (at times) and amazing friends. My Mum, Ryan and I worked together over the years to make sure Dad has had what he needed. It wasn’t always easy, and I hope those who are reading this understand that I am not trying to paint an image of a perfectly easy life, but I try not to dwell too much on the past. I could tell you about times that I left my Dad’s house because I was scared for my safety. I can tell you about the nasty things he said to me such as ‘I’ll burn you out of your house’. What good will that do though, it wasn’t really my Dad. My Dad loved me, and I choose to remember the times where he taught me how to drive a speedboat and played house with me when I was a child. I have more memories and years of Dad being sick than I do of him being a fit and healthy man, but I don’t want to resent my Dad, and I don’t want to blame him for the hardship I have endured. He didn’t ask for this life. None of us did.
Dad is 54 and lives in a nursing home close to my brother and I, so we can visit him regularly (pre Covid), and keep him up to date on what we are doing. I love sharing photos with him and telling him all the local gossip!
My life hasn’t been easy, but I don’t think it has been one of the hardest either. I am very aware that there are many people out there worse off than me. I try not to dwell on the negative, and remind myself of the positives that Huntington’s has brought into my life.
Huntington’s disease made me sit up and pay attention, I made memories with Dad when I could, and only wish I could have made more. I have made more friends around the world who are also affected by this and I cherish my friendship with them! I have met authors and attended some of the most amazing Huntington’s conferences and summer camps. I have made a career and hobby out of Huntington’s, writing about my experiences on the #ImNotDrunk Lifestyle Blog, sharing with others what it is like to grow up in a Huntington’s family, trying to help those who might be coming behind me.
I am thankful for what this has provided for me, and I am grateful for the journey I have had and whatever the future might hold for me. I welcome it as a new challenge and a new opportunity.
Ashley Clarke
Northern Ireland