Finding a starting point for a story like this is difficult. I don’t want to place the blame for all my challenges on one person or relationship. However, what happened during our time together affected me deeply, but the end result was ultimately for the better. I was 19 years old when my mum first told me that Huntington’s disease runs in our family. At the time, I had just started university, moved out of home, had gained a huge sense of independence. At that time, I chose not to deepen my knowledge too much on what the disease was. Huntington’s is a genetic disease and with my mum being positive it gives me and the rest of my siblings a 50 percent chance of inheriting the disease. When I found this out 8 years ago, the possibility wasn’t so much of a concern. The prospect of a medical condition didn’t affect how I was living my daily life at the time.
“Huntington’s is a genetic disease and with my mum being positive it gives me and the rest of my siblings a 50 percent chance of inheriting the disease.”
When I met my ex-partner, for the first time in my life I thought I was in love and that he was the one. We had just bought a house together, both had great jobs, common interests, and we were taking the steps towards having kids. I told my ex-partner about the possibility of having Huntington’s from our second date. Sadly, Huntington’s was always this big dark cloud hanging over us that we would shy away from to maintain our happiness. In the end, our relationship could not withstand the pressures of the diagnosis experience. I hope that reading this account will help other people in similar circumstances.
With medical advancements, my partner and I began talking about having kids. Medical science has now made it possible to stop the positive gene passing onto further offspring. However, it requires the process of In Vitro Fertilization (IVF). Despite the controversies, IVF was always going to be the right option for me given my genetic profile. It was around February 2019 that I started talking with my doctor about getting the genetic test and the implications of testing.
It was comforting to know that my brother was also going through the same reality of the potential Huntington’s gene back home and having each other to talk to about it was a privilege I’ll never forget. I wish everyone had the support system available. After finding out my brother’s negative results, I decided to finally get tested. For me, it never really mattered what the result was. I was never scared to find out for myself, however, I was constantly scared of what my ex-partner’s reaction would be. It was only later that I realized how unhealthy this relationship dynamic (around testing) became.
The testing happened after our great holiday in Europe. I hadn’t told many people I was getting tested. I didn’t even tell my dad, whom is usually my confidante. My ex-partner came with me to the hospital and we argued over who he could tell whilst in the waiting room. His willingness to share this information freely (sometimes publicly) made me uncomfortable. There was an 8 week wait for the test results. For me this period was manageable. It is only now I realise we never sat down and spoke about what the result would mean. The only thing he would say quietly is “I’m not sure I can do this”.
In my experience, when someone doesn’t show you affection, it just makes you want the relationship more. For example, every time my ex-partner told me he couldn’t cope, I would shy away from the conversation and do anything he wanted to avoid losing him. I was in the second place and my self-worth was based on his opinion of me.
It was Boxing Day 2019, we had just spent a week and Christmas day with his family. We had a great time and I felt on top of the world. However, his dad called and everything changed. His family said they didn’t approve of me because of my facial tics and I should be at home “being looked after by my family”. I was in shock. I left home 5 years ago and I have never needed to be looked after. I have been living with facial tics for over 15 years. I could say battling, but for me I don’t see my tics as a battle and never have. For example, I don’t have any trouble making friends, dating, getting a job, or doing sports.
My ex-partner was forced to choose between me and his parents. To help him with his decision, his parents offered to buy me out of whatever I paid for the house. At first this was all just absolutely ridiculous and crazy, but now I am truly glad that I got to see his true feelings towards about the situation. If this all wasn’t enough to deal with, I had my genetic results in just one week while being rejected by his family and by him.
When our relationship was strong, I was optimistic for my results. If I have the gene, at least we knew we could have IVF. Results day is looming and I was scared. Not for me but for him. If the result weren’t what he wanted this was finally the ticket to leave the relationship. I made the decision to receive the results by myself. I was too scared of my ex-partner’s reaction to accept his offer of support. This was the beginning of a new strength and independence for me.
I sat in small hospital room, a lady I had not met before came to give me my result. “I’ll get right to it’” she said. “Unfortunately you do have the gene”. I replied “Ok, no worries”. She passed me a tissue as a few tears ran down my face. Throughout the whole process I had always said I thought I had the gene, so I wasn’t surprised when she told me. We didn’t talk for long until I got in my car and started to drive home.
I’ll never forget that drive. Phone turned off because I didn’t know how to break the news. It was 1am back home, my brother and mum knew I was getting the result. I called my brother first. At this point I was in a bad way, I had no one to give me hug, to comfort me and tell me it’s going to be ok. I couldn’t have felt further away from home. Why did I decide to be alone? My partner came home and found me crying on the sofa. I didn’t need to tell him the result, he knew what it was by looking at me. This was it, here was his ticket. But I look back now and I see it was my ticket too.
“I’ve lived my life everyday with this gene, the only difference now is I know, and can deal with it.”
The next few days were hard, but I did what I do best, put on a brave face and pretend like nothing’s happened. I went to work the very next day, I tried to stay busy but my partner just couldn’t deal with it. We were arguing constantly and he had doubts about his ability to support me. The relationship dynamics got me thinking about my own self-worth and allowing another person to decide that for me.
We were arguing over silly things, the tension was extremely high, one day we were fine, the next we were discussing how to break up. He kept saying he needed time to decide if he could support me through this or not. In my head I was like it’s a little late for you to be thinking about that now, we just brought a house, we discussed kids, I got this test for US. This went on for a few weeks until the light bulb finally switched on. Why was I waiting for a man to determine if I was good enough or not. Finding out the result didn’t change me over night, I was still the same person, I still loved him the same, acting the same, went to work the same.
This illness is not something that will affect me for years. This is when I realised I deserved the love story of my brother and my now sister in law. He said he loved me, but true love shouldn’t be dependent on my genetic status, he shouldn’t need to think about if he could support me. For the past year I already knew he couldn’t support me, look back at all the red flags I’ve pointed out but chose to ignore. I finally got the courage and said I can’t be with someone who has to think about it, I deserve better. And that’s why I wanted to write my story. To tell others that you are good enough and to be strong enough to walk away when you are being treated badly.
A fight in the night led me to move out instantly and leave behind the life we had built, the first home we’d purchased and the kids we were planning on having were gone. Just like that. For the first time in my life I was heartbroken, devastated and in a very dark place. I was dealing with what his parents had said about me, my test results and now a break up. To top it off I am 18,745km from home. WHAT ON EARTH AM I DOING HERE?
I asked myself this question every day. I didn’t have time to grieve my test results because the break up hit me a lot harder. I’ve lived my life everyday with this gene, the only difference now is I know, and can deal with it. I have never been through a breakup like this before. I cried A LOT, I ate very little. I tried to stay busy but I didn’t even like my own company, how could I expect people to want to hang around me during this time. It was also difficult because I didn’t want people to know about my illness so I could only tell them half of the breakup story. This made me feel very alone. I read break up articles, confided in my boss a lot for support, spent hundreds on a therapist, but I knew only time and my mind could heal me.
“I knew I was strong, I proved I could be strong, I put myself in hard situations and now I have come out stronger than ever. The best thing, my new journey has only just begun.”
It has now been a few months since I moved out and I’m starting to feel myself again. I solemnly believe everything happens for a reason. We find ourselves currently in self isolation due to coronavirus. I am so thankful I find myself in a nice house with sea views, surrounded by fun loving housemates. I have found myself laughing again, telling silly jokes, having a few drinks and not feeling guilty. I’ve made time to bake and cook, to run and cycle and more importantly to sit and write this in the hope that it reaches just one person in need and to tell them, it does get better. I knew I was strong, I proved I could be strong, I put myself in hard situations and now I have come out stronger than ever. The best thing, my new journey has only just begun.
Some important things to reflect on:
My genetic status does NOT determine who I am. Yes it’s not ideal, it weighs on my mind, but I can still get up every day and live the best life possible. Life’s too short. Get out there and make a difference while you can.
Being on your own is better than pretending to be someone you’re not in a relationship.
Your own self-worth is so important, never let someone tell you you’re not good enough.
Stay true to who you are and let others do the same.
Your own thoughts and reactions are the most powerful thing you have control.
Everyone has a story, trust in people to help make yours stronger
You are NOT weak for having emotions.
Author: anonymous
Editor: Amy Hogan
Amy is a health researcher with a background in Psychology and Health Education. She works as a researcher for a number of health-related charities and writes health articles. Amy also guest-lectures for medical students and allied health professionals. Her interests include patient-practitioner interactions, knowledge translation, health literacy, and health equity.
