Huntington’s came into my life later on. We had no history of Huntington’s in the family that we were aware of. It came out of nowhere.
My Mum’s Mum had died at 41 from a heart attack before my Mum was even married. My Mum then had a heart attack herself when she was 40, and had a lot of health problems following on from that, mainly related to heart disease. When she began to develop more unusual symptoms, doctors put it down to strokes or complications of her heart operations and that sort of thing. It didn’t seem to occur to anyone at this stage that it could be something else.
Things dragged on and it was several years later, in 1999, that Mum eventually went to see a neurologist. After being tested for basically everything, Huntington’s came up out of the blue.
We got the news a month before I was due to get married and it was a huge bombshell – especially learning that it was hereditary, which meant that my older sister, my older brother, and me, all had a 50% chance of getting it. My brother and sister both made the decision not to be gene-tested, and just kind of got on with their lives.
I however knew straight away that I would probably want to be tested at some point. I needed some time to absorb it all first though, which wasn’t easy with an upcoming wedding and Mum’s declining health.
Immediately after the wedding, our thoughts went to our decision to have children. We had both really wanted to – were we still going to try? At this point I was only ‘at risk’, nothing was certain. There were no pre-natal options available to those at risk back then, so it came down to hard facts and tough decisions. If my Mum had known she was at risk and had chosen not to have me, I wouldn’t be here and lived the wonderful life I had. Also, Mum was late onset, so there was a good chance that if I did have the gene that I would also be late onset. There was lots of time before things got tricky. It seemed to make sense just to go on and at least try and start a family, after all we didn’t even know if we would be able to. We left it in the hands of fate, and I got pregnant within the first couple of months and went on to have three (wonderful) girls.
I tried to put the thought of being tested out of my head but in reality the thought was there all the time throughout my marriage. I started the testing process a couple of times in those early years, but I clearly wasn’t ready, as something always stopped me carrying it through.
Unfortunately, over time, my husband and I grew apart. Despite trying hard, we realised it wasn’t going to work. Somewhere along the road of the counselling I was having during my marriage breakdown, I started thinking about the idea of testing again. So, in the end, I got tested right in the middle of my separation! This time I was determined, and once I’d made my mind up, there was no stopping me.
Getting tested was a real turning point for me. I had struggled at times with low mood and anxiety during my marriage. My Mum had died of heart failure in 2001 two years after her diagnosis and that had hit me hard. Bizarrely enough, despite becoming a single parent and finding out I had Huntington’s all at the same time, I now found myself in the best mental health shape I’d known for years! The uncertainty had been torture, but now I felt a sense of relief, and I felt empowered. I immediately started working on my bucket list.
Although I’m very content with my life, a bit of romance would be the icing on the cake, and I feel like I’m in a great place to find somebody new. I think I would be more comfortable in a relationship now than ever before, I know what I want and what I don’t want, and I reckon that I’d make a fantastic partner! But dating isn’t easy. I’m pretty sure most women in their fifties find online dating a challenge, but when you throw Huntington’s into the mix it’s even harder! It is always on my mind, how quickly should I tell somebody?
Huntington’s is a big part of my life and because I do a lot of work with our charity, I’m pretty ‘visible’ online, so I’ve had to drop the HD bombshell on dates much earlier than I would have liked. Unfortunately, this has led to many men disappearing quickly after, or me being “friend-zoned” before they have really got to know me. It’s not ideal, but I guess it may be a way of quickly weeding out those who can’t handle it!
The thing is I do have reasonable expectations. I now have the experience to have grown past the fairytale fantasy. I’m strong and independent, and all I’m really after is some good company and romance. I think everybody thinks I’m after a live-in life partner, or heaven forbid, a future carer. I do think that people shouldn’t write off those with the Huntington’s gene too soon. Give it a chance – really get to know them – it might just pay off – I personally think I have a lot to offer.
My girls are now 13, 18 and 20. They didn’t know their Gran, so all they have really known of Huntington’s so far is me, and I’m thankfully still asymptomatic. They are absolutely amazing! I’ve always encouraged them not to worry about me, because I’m not worried, and also not to worry about themselves as Huntington’s is a long way into their future, if it is there at all. They are so supportive and positive of everything I do, both when it comes to raising awareness of Huntington’s, fulfilling my dreams and ticking things off my bucket list – which has so far included fire walks, a skydive and my upcoming wing walk with a loop the loop!! Life is so important, so valuable, and I don’t want to waste a single minute, as my time is precious. Huntington’s doesn’t define me, but it has presented some great opportunities. Telling people my story has improved my confidence, and I got to meet the gorgeous actor George Rainsford as part of this campaign – and that was AMAZING!
I can genuinely say that I am happy with my lot. I think anyone who meets me would describe me as a positive, upbeat person, and it is strange but true that that positivity really only came after I knew that this was my life and my destiny. I stopped sweating the small stuff and my old worries and anxieties disappeared. I knew what I was dealing with, got to know myself, and buckled in for a new life, one to enjoy and make the most of. I know not everyone feels that they can manage that outlook, but I hope that for people who are just starting out on their journey, they can see that this can be a beginning as well as an end.
Gillian McNab, Scotland