𝕆𝕡𝕖𝕟𝕚𝕟𝕘 𝕌𝕡 𝔸𝕓𝕠𝕦𝕥 ℍ𝔻
The amazing HD Queen has very kindly greed to be featured on Story Time, and i hope you enjoy reading her story as much as I have!
The HD Queen has an incredible Instagram page which im sure she would appreciate a follow on! I would reccomend following her and her content is inspiring, real and uplifting!
I would seriously advise reaching for a box of tissues, not because you will be extremely depressed after reading this, but because you will be so incredibly uplifted! We take things in life for granted, we make excuses – “Ill do that tomorrow” or complain about the regular everyday things we have to do. Imagine you couldnt do those everyday things, be grateful for what ever verson of life you have 😀 Inspire people just like this beautiful lady, both inside and out!
But there is joy to be found, good moments in the everyday. And when you find out that you have a disease that is going to completely change you as a person and strip you of the independence you were so used to, you look at life a little differently. The HD Queen.
In 2013, my world crumbled around me. I had known that something was up with Mum. But I didn’t know it was this bad. When they sat me down and told me that what Mum had was Huntington’s Disease, I just lost it. I’m not sure why. Relief maybe, that there was something wrong. Fear that there was something wrong with Mum. Despair that HD wasn’t something Mum would get over, this would eventually kill her. Worry when I found out that the disease was genetic, that my brother and I both had a 50% chance of inheriting the disease. Sadness at what this meant for my family, what this meant for Mum. Anger that no one had told me sooner, even though Mum had been showing symptoms for a few years. Gratefulness that Mum gave me those years to be selfish and carefree. Thankful that they told me before I accidentally got pregnant or things became really serious with my boyfriend. Fear of what the future would hold for Mum and me, maybe for my brother.
There was just so much going through my mind, and it seemed like I would never feel normal again. Then, the following year, in 2014, my world crumbled again. I sat down in a little office and was told that I too, had inherited Huntington’s Disease and would follow a similar path to my Mum. One day, I would also deteriorate, losing my ability to swallow, eat solid food, talk, keep track of my thoughts and eventually move. And while I was dealt a shit hand, I also felt relief. Relief that I finally knew. That I could plan and move forward and make sure that I lived the life I wanted to live, regardless of when symptoms might hit. It meant both my husband (then boyfriend) and I knew what was in store for us, and that we could plan our family together without fear of passing on the disease. We’re all different and getting tested is such a personal thing, but for me it was a must.
Only a handful of friends knew, and our closest family. It wasn’t something I wanted to talk about. It was so fresh. I wanted to process it all, without worrying about how everyone else was feeling. I needed to feel it all, to be vulnerable, to be down and upset so that I could move forward. So I could feel normal again.
As the years went by, not much changed. While HD wasn’t at the front and centre of my brain, there was no blocking the fact that it was there. I still couldn’ really talk about it without getting emotional. Seeing Mum weekly meant that I had to confront it, because I was seeing my future play out right in front of me. But I always pushed my results to the side and focused on Mum. Why would I worry about me, when I’m healthy and not symptomatic, if my Mum is the one who is suffering. And still, she is my priority and will be until she passes on. It doesn’t mean it’s easy seeing her though. Every drive home after a visit leaves me emotionally drained and at my most vulnerable. And that’s usually when I post on Instagram to share my thoughts, because that’s when I feel everything so strongly. It’s raw and it’s real, even if it’s hard to say.
In a way, I feel like focusing on her has helped me open up more. I want people to understand. Understand what it must be like for her. Remember her for who she was before this cruel disease took over. Realise that when she shut people out, it was because she was struggling to come to terms with what was happening to her. I’ve learned from her shutting herself away that I don’t want to do that. I want to be open. To raise awareness. To share our story. To help people understand that Huntington’s Disease is real, and it is affecting families all over the world.
We’ve been really lucky, in our unluckiness. We have an amazing and close family. We’ve travelled. We’ve bought a house. In 2017 our little PGD IVF 97% HD free baby boy was born, our first little embryo from our first round of IVF. Which is why I’m sharing our story. Because it’s not all bad. It can be, and some days it feels hard to get out of bed in the morning. But there is joy to be found, good moments in the everyday. And when you find out that you have a disease that is going to completely change you as a person and strip you of the independence you were so used to, you look at life a little differently.
There was something in me that always wanted to share more about HD. But I was wary. Would people see me differently? Would this be something that always hung over my head? Would my friendships change? And then when we had our son, I needed to consider him too – how open did I want to be and for how long could I talk about it before he found out. In the end, I just bit the bullet and did it. And you know what? Not much changed except that people understood now what I had been going through. That the seemingly perfect life had a whole lot of shit going on in the background. And while it was terrifying and I wasn’t sure how it was going to go, it’s honestly been one of the best things that I could’ve done. Even if it’s just temporary. Even if I just have this account for a couple of years and then call it quits.
Opening up means I’ve connected with amazing people all over the world. People who feel just like me, who are going through what I’m going through. It’s also been about a fresh perspective. Encouraging people to open up too, to be vulnerable. To not be afraid of sharing and to see the good that comes from it – and that’s regardless of whether people have a connection with HD. I’m not sure how far I want to take it, but for now I’m enjoying meeting new people, sharing my story and realising that my voice is being heard, and it’s helping. And I always thought if I could help even just one person with my words, then it would all be worth it.
#Imnotdrunk – Lifestyle Blog