Living life on my terms as a young adult with heart disease

12 Apr 2021

I was diagnosed with atrial septal defect by accident, when I was applying for a Class 1 Medical Certificate for my commercial pilot’s licence.

Until then, I was a completely healthy 24-year-old who had recently returned from sailing a tall ship from Argentina to South Africa via Antarctica (without insurance!), and sixteen months prior, had represented Australia at the World Dragon Boat Championships.

Congenital heart disease (CHD) was not in my vocabulary nor in my plans, at all. After being told “your heart looks like a cheese grater”, I figured I would be out of action for three months waiting for my surgery, another three months for recovery, and then I would carry on with my life as planned.

How blissfully optimistic I was! Recovery is hard. Life is hard. I am now fourteen months post-surgery and having developed chronic pericarditis (six episodes and counting), life is nowhere near where I thought it would be.

But while I was somewhat mentally prepared for the physical challenges of heart surgery, I was absolutely not prepared for the hardest challenge – recovering my mental health and sense of self.

Until my diagnosis, I had measured my self-worth by comparing my successes against those of others. I always had to be the best, and the first – the best in school, academically and in extra curriculars; the first to graduate, get a fulltime job; the quickest career progression and salary growth; visiting the most countries; the youngest of my peers to buy a house.

Being diagnosed with CHD and overcoming the complications from surgery in my mid-twenties when my friends and colleagues around me were travelling, getting jobs overseas, getting married and having children, really challenged who I thought I was and how I valued myself. I traded weekend getaways for hospital stays, and my faith that we had infinite sunsets for the realisation we had finite heartbeats. I could no longer keep up with them due to my “bad luck”, I was a broken and I was failing at the game of life.

Over the last fourteen months, I had to develop strategies to improve my emotional wellbeing and redefine my self-worth, particularly during the down days where I found myself wallowing in bouts of “why me?” and “it’s not fair”.

Here are the practices which I found worked best for me.

1. Let go

Allow yourself to mourn for the person you used to be and the life you thought you would have. That person is gone. I think this is one of the key challenges of adult CHD (or acquiring any life-long illness when you are a young adult) as opposed to being diagnosed at birth.

This grieving process, as entitled and shallow as it may sound, helped me to turn the page on the life I had wanted for myself and focus on the new life I would be creating post diagnosis and surgery.

2. Control what you can (and ignore the rest)

Focus on the things you can control rather than the things you can’t. I find this practice helps me to focus on the things I have rather than the things I have lost and the things I can’t change, which makes me feel more in control of my situation and the life I choose to lead.

So while I can’t control my dependency on medication, I can control my diet, how many steps I take each day, and the way I choose to spend my time. This helps me to live my life on my terms regardless of my health.

3. Find other happinesses

While you may not be able to do all the projects and adventures you had hoped for yourself (at the moment), you can find other ways to keep doing the things you enjoy and which give your life meaning. For example, I can’t really travel because I can’t get travel insurance for my heart condition (without paying a fortune), but I can live in big, beautiful Australia.

So rather than going to Fiji over Christmas, I ended up sailing in the Whitsundays with my family. I can’t be a pilot, but I can still work in aviation. I love hiking so while I may be unable to do overnight hikes, I can pace myself and still do day hikes.

I found that by being creative, I can find other ways to keep doing the activities that make me happy and bring me towards my personal and professional goals within the boundaries of what my body can do.

4. Race your race

This goes towards re-establishing our sense of self-worth. I learnt that I couldn’t compare myself to others. Our lives are different, our challenges and opportunities are different, and in the end, we all want different things.

I ended up deleting social media altogether (until I discovered Supporting Young Hearts!) and stopped caring about what other people were doing or what they might think. This helped me to focus on the activities and goals that meant the most to me rather than measuring my life against the standards and expectations society set for us.

I redefined my self-worth against my own values, focusing on the strength of my connections with the people I care about and spending my finite heartbeats on personal and professional projects I believe in, and am happier for it.

Fourteen months post-surgery and every day is still different. However, I found that by using the above practices, I am better able to manage the emotional ups and downs and continue living life on my terms as much as possible.

I hope that, depending on where you are in your heart journey, you can take comfort in knowing you are not alone in struggling with your mental health post-surgery, and perhaps can use some of these strategies to help you redefine who you are, heart warrior and all.

Lea is a member of our Supporting Young Heart program which works with younger people, aged 18 to 40 years, who are living with a heart condition or recovering from heart surgery?.