We were told about Huntington’s Disease when I was 14. My sister was 18 and was due to go to Lancaster University, a good few hours away from home. We were told at this time as Mum has started to show symptoms and I was picking up on them. They didn’t want my sister to be away and for something to happen. I don’t always remember a lot from this time of my life, perhaps it’s the ‘trauma’ being blocked out, or perhaps I have subconsciously chosen not to delve into those memories. But what I do remember is that I already had some deep routed issues by this point; self-esteem issues, depression from a young age, and it was that time in school life where it is bloody hard. My body was changing, I had my first boyfriend, and all you want to do at school is ‘fit in’ and ‘be cool’.
Trying to deal with news of Huntington’s Disease was difficult. I felt isolated, confused, and pretty scared for my Mum too, with no one who I could confide in as no other 14-year-old would be able to give me the support I needed. It was a lot to have on my shoulders when I look back on it. I won’t make this the story of my teenage years as that is most definitely a blog for another day, however the long and short of it is that I developed a serious issue with control.
As soon as I hit my 18th birthday, one of the first things I did was contact the genetic counselling service. You cannot have the test before 18 unless you are showing signs of Juvenile HD, which around 10% of cases do. I was head strong and adamant it is what I wanted and turned up to my counselling on my own. The counsellor was concerned about various things, one being my age, another being the lack of support I had allowed myself. There were so many factors I hadn’t considered, and this is where the genetic counselling is incredible; they take you through step my step every ‘what if’ imaginable.
She advised that I went away again and had some time to think and come back if I was sure it was the route I wanted. Having someone question if I was ready made me mad. How do they know how I feel? Who are they to dictate my life? I remember walking away feeling hot headed and frustrated. I was too stubborn to go back for a while, and boy am I glad. Perhaps she had a little intuition that I had some battles I was going through already. In hindsight, I was nowhere NEAR ready to know. I was a troubled teen and had so many issues brewing, if I had found out bad news at that point it would have certainly been catastrophic, and I know I would have suffered some serious mental health consequences.
I didn’t actually test until I was 23. I had started University at 19, and it had ruled my life continually. I couldn’t watch films like ‘The Notebook’ without feeling deeply depressed that I might not grow old. I couldn’t allow myself to feel broody as I convinced myself I might not be wanted by anyone if I had HD. Would I be able to go through with PGD? (you can have eggs removed and genetically screened so only the eggs without HD are implanted). Would I be judged if I just had kids anyway? My control issue had spiralled out of control at University, again not for this blog but the burden of not knowing had been like a cloud over my life. Fortunately, some good friends had helped me through the other side with a lot of support and patience over two years (one of those good friends now being my husband). I qualified at 21 and left University.
Shortly after graduating, I began my job as a frontline paramedic. My first year was a true ‘baptism of fire’, and I saw some sights I hope I don’t see again (thought I am sure I will, nature of the beast). This bought a whole new level of anxiety, fear and overwhelming sense of responsibility. I started to fear losing control again, and had flashes of me making a drug error, or crashing the ambulance if I began to develop HD without knowing I had it. How could I go to these incidents If I had HD symptoms? How can I practice safely if I don’t’ know? It was my dream job and I had worked hard to achieve it, I felt I needed to know at this point so I could make sensible career decisions further down the line. I never wanted my registration taken off me unexpectedly, I wanted to be able to make that decision myself.
I had been with Chris for just over a year at this point, and he had already seen a whole range of moods and emotions from me. We had another difficult year with me battling low mood, anxiety and depression. I was so up and down, and some days I made it a miserable environment for anyone around me. If you’ve lived with someone who is depressed before, you’ll know this is no easy task. Some days I wanted to take the blood myself and drop it at the laboratory, other days I wanted to vomit at the thought of “I’m sorry Emma it is bad news”. I would look at women with babies and feel angry and sad, if Chris made a sweet gesture about “when we’re old and wrinkly” I would snap at him. If friends talked about marriage or children or growing old, I felt I couldn’t even contribute to the conversation for not knowing if my life was going to pan out that way or pan out as needing full time care.
It is one of the loneliest places to be in, the only one who could relate to me was my sister, but she had her own demons with it including a struggling marriage. Me and my sister were never great at confiding anyway, we are chalk and cheese, to the greatest of extents. I also knew that the concept of having HD terrified every single cell in my sister’s body. She wanted kids and marriage far more than I ever did, and she feared the disease more. Rather ironically, I had cared for a lady with HD during my years working at a care home whilst studying. This had made me come to terms with the disease and fear it a lot less, but what I had struggled with is the feeling that I wouldn’t be able to plan my life or grow old with someone, having to take early retirement from a career I loved. The things we take for granted all the time.
I couldn’t comprehend the thought of telling my parents I had it. I wouldn’t want my Mum to feel guilt or any more pain, and I wouldn’t want my Dad to think he has to look after me. All of these thoughts just circulated daily. Some days they were crippling. Other days they were fleeting and I could function quite normally. I tried a course of anti-depressants, a desperate plea to stop me feeling so helpless and give me some stability, but they didn’t help at all. In fact, I am sure I was worse as I didn’t get the natural ‘highs’ as much. My GP said one day in an appointment, “I don’t think anti-depressants are really going to help your situation”. At that moment it all clicked to me that I needed to find out so that I could deal with a physical result and no more “what if” questions. All my low mood and anxiety was centred around the test.
I had my counselling, taking Chris to the final session with me to ensure he was ok too, as ultimately, he was going to need to be supported through it too if it was bad news. I think this is important to remember; whoever is going to be supporting you through it needs to be fully informed and supported too. They offered Chris his own counselling sessions which I thought was incredible. This time round I made sure around five close friends from different circles knew I was testing, so I had plenty of avenues for support if the news wasn’t good news. I did keep it from my family, right or wrong, but at the time I just wanted to protect them.
My plan was to receive my bad news (I couldn’t allow myself to have any hope it was good news), get to a point where I could function and cope, and then tell them so that they knew I was OK. I thought this might give my sister some hope too that life can be ok after a bad result. I’ll never forget the night before my test, it was surreal. Me, my sister and some friends went to a 90’s pop concert to see Bewitched, Five, and a few other cheesy bands. We had an amazing evening, but I remember just constantly thinking about the next morning. My sister had just temporarily separated from her husband and I didn’t want to add to her stress by burdening on her, so I kept it quiet still.
Arriving for the test, a neurologist observed me as I walked in. It wasn’t until after that he told me the series of physical tests was to look for subtle symptoms of HD already being present. It suddenly became very real, but even after the blood was taken it hadn’t really hit me yet. I knew I had a few weeks to wait, and as I walked out, I felt in my gut I had made the right decision and I was ready. The next few weeks were the slowest of my life. Each day felt 72 hours long, each night’s sleep felt like 2 hours. Work was a struggle and I couldn’t stop thinking about how I was going to go back to work after I got my results. Me and Chris decided to book a weekend away the day we got the results so that I didn’t have to see anyone. I lay awake the night before my results, clock watching. Every minute felt like an hour, and I just wanted to fast forward.
I couldn’t say much to Chris on the way to the hospital, I was keeping my calm and didn’t want anything to jeopardise that. I didn’t want the radio on, I didn’t want to talk about anything. I had the friends that knew text me and I couldn’t even open the messages. The thing that had dominated my life for nearly 10 years was about to have it’s lid opened. I could see Chris was scared, but I felt ready to know, and weirdly wanted to make sure he was OK. I am a total rescuer by nature, and the nature of low self esteem also means you don’t really care about you, so at this point I just wanted to be strong so Chris knew I was alright. I don’t do well with looking vulnerable and try to be ‘Miss Independent’ a lot, despite needing support more than I like to admit.
We sat in the waiting area and had a few nervous laughs about whether I was going to wet myself or sweat any more that I would need to get changed. My mouth was so dry I felt like I’d been chewing cotton wool, but I couldn’t touch my water as I felt I would vomit. My stomach was like a washing machine, and my head was racing. Hurry. The. F***. Up. That’s all I kept thinking. We were welcomed into the room after a few minutes and the counsellor avoided making any body language gestures or facial expressions. I sat down and looked at the floor holding my own hands. Within a minute of being in the room, the consultant said, “It’s good news Emma”. I looked up and said “You’re joking? Are you joking?”. Obviously, it would have been a very sick joke, but no part of me had prepared for a normal result. Chris burst into tears and I just sat back and said “F*******ck”. We walked to the car and drove to the Forest of Dean. Not much was said, it was so much to take in. Weirdly, I still felt this overwhelming sadness, but couldn’t put my finger on why. I put it down to shock. The first few hours away we just kept going over and over it, in disbelief. After a few hours though, my mood changed, and I hit an absolute low.
I don’t know if anyone else with a negative result experienced this, but I started to feel complete selfishness, and wanted to take the test back. How dare I not have it, what if my sister has it and I don’t? How can I celebrate when my mum is at the hands of this disease and can’t escape it? The old ‘survivor’s guilt’, hit me like a lorry full of bricks. I went through over a year of feeling this way, and for the first month following my test my depression hit a new low and I didn’t even get out of bed some days.
I didn’t really feel appreciative of my result until I fell pregnant with Rosa. She changed my world. She gave me a reason to feel worthy of being on this planet and gave me a reason to be ever grateful for my result and not feel selfish for it. My true release from the test only came when my sister finally tested and also had a negative result, following her falling pregnant with my nephew Freddie. A knowledge that I could focus solely on Mum and giving her the best life in the final stages of HD was now all I had to focus on. That has been my driving force for staying positive and continues to motivate me every day to make a difference.