Adjusting my goals - Elis' story

“I have had great support from my friends, family and girlfriend. They know when I’m ok
and when I’m not.”

I was diagnosed with hypertrophic cardiomyopathy after years of screening and testing. The condition was found to be in my family after my father passed away unexpectedly. The hours I have spent in the hospital not knowing whether I had the condition or not was extremely stressful. Initially, being diagnosed made me really scared. I was 22, all I could think about was how my father was 30 when he died and I thought that I may only have a limited time left.

Thoughts go through my head on a daily basis: ‘do I want to have children’ as it is a genetic condition, and ‘will I be able to work when I’m older’ in case I get quite ill. I’m 23 now and have recently got a job
after university. I question whether my life will ever be ‘normal’ (even if it isn’t a stereotypical ‘normal’ like my friend’s). 

I have been told I can’t play rugby (which for a Welsh boy is awful), I can’t play squash, I can’t lift heavy weights - all things my friends do. Knowing that I can’t join in with certain activities and having to be careful in the gym can be quite disheartening. It’s hard psychologically that you can’t do the same as everyone else, but it is important to find other activities rather than completely stopping everything you used to do. I still go to the gym, but instead of lifting heavy weights and pushing myself to the limit, I stick to weights I know don’t put too much strain on myself, and keep an eye on my heart rate with my Fitbit. I do football training, but play in goal rather than outfield. I go for jogs and have recently got into hiking. Along with a healthy diet to keep my heart as healthy as possible, this allows me to keep fit and active, and not focus on the fact I can’t play the sports I used to.

My mother is a retired cardiology nurse, and is great at explaining things about the heart and making sense of things at hospital appointments. My girlfriend has been extremely important in keeping me psychologically healthy. 

I would recommend accessing information and support if you feel mentally or physically unwell and don’t know who to talk to.

©Cardiomyopathy UK. October 2017