I found out about Huntington’s Disease in 2014, when I was 21. The day before my birthday. I knew something was up with Mum. For a couple of years her movement was a bit disjointed, and she slurred some of her words. It just seemed like the connection between her body and mind was a bit out. I had been going around in circles trying to figure it out, but I had no idea, and it was really bothering me – especially when friends (or even strangers) would make comments. Finally, we organised a time where they would tell me. My brother was meant to be there too, but he chose to not come, I guess he just wasn’t ready.
As soon as I found out, the first thing I felt was relief. I couldn’t stop crying, but mostly because I could finally put a name to what was wrong with Mum. But then I was crying BECAUSE there was a name. Not only did she actually have something, but now I know that both my brother and I have a 50/50 chance of getting it, and so do any children we have. Relief was replaced by fear and sadness. Worry. I had been with my boyfriend for about two years, what was he going to say? Will he want to stay with me? What is my future going to be like now? What about my brother. What if he has it? Please let it just be me.
I made the decision to get tested basically straight away but I wanted to wait a year to let it all sink in. And also, in case I changed my mind. I’m the kind of person who needs to know. I like to plan. I like to prepare. And I knew that I would struggle more not knowing than knowing. I also wanted my boyfriend to have the full story before committing to a life with me, and so we could plan what we were going to do about potential children. It was a tough thing, being a 21-year-old and having to figure all of this out.
The year came and went and while I didn’t think about it every day, the test definitely weighed on my mind. What was just a simple blood test would end up with a life changing result, but I still knew that I NEEDED to know. Honestly, I was 50/50. I had accepted that there was a real likelihood I would end up being gene positive, but I didn’t feel like I had it, or didn’t have it. Prepared for the worst but hopeful for the best, I guess. My partner and I went in together for the result, and even before they told me, I could see it in their face. There was awkward small talk and I could tell they didn’t know how to say it.
But they did. “I’m sorry Kate, you are gene positive for Huntington’s Disease.” I cried. For a couple of seconds. But then I stopped and realised, actually, I’m fine. I’m going to be fine. It’s fine. My mum and gran came in and we told them the news. I don’t think they were surprised as we had been there for a while. But still, I know how hopeful they had been that I would come out with a more positive outcome. My husband said he was fine. He had convinced himself that I had it anyway, I think he just wanted to prepare himself for the worst-case scenario.
And then, life kinda just continued. My husband and I started making plans. A wedding. Getting into the process of IVF. Getting on the waiting list. Setting up the tests for the embryos. Going through the whole IVF process and eventually ending up with our 97% chance of being HD free baby boy. Despite HD being a massive weight on our shoulders. Despite having to watch my mum deteriorate year after year. Despite still waiting for my brother to be ready to find out about Mum and share this burden with me. Despite always worrying about HD whenever we make any plans. Life. Is. Good. The HD psych nurse told me to treat this as if it was the biggest kick up the bum I’ll ever have and so I am doing that. Every. Single. Day.