I am
Living life on my terms as a young adult with heart disease
heartfoundation.org.au|Helpline 13 11 12

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

Lea was diagnosed with a congenital heart defect at 24. She shares her story of recovery.

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​.

You might also be interested in

Cyril credits cardiac rehab for getting his life back

Cyril credits cardiac rehab for getting his life back

Cyril credits cardiac rehab for getting his life back

Cyril suffered a heart attack in 2015. Cardiac rehab helped get his life back on track. ...

Heart stories

Heart stories

Heart stories

Stories of hope from Australian men and women fighting heart disease....

Exercising for heart and soul

Exercising for heart and soul

Exercising for heart and soul

Alicia Philipatos was three days old when her heart condition was diagnosed...

Gerry had heart attack warning signs on his dream holiday.

Gerry had heart attack warning signs on his dream holiday.

Gerry had heart attack warning signs on his dream holiday.

I’d always thought of myself as fairly fit; I swam a lot, and did ‘soft running’, a combination of running and walking. ...

Meditation helped Grant recover from his heart attack

Meditation helped Grant recover from his heart attack

Meditation helped Grant recover from his heart attack

Thankfully for Grant Byrne, a lifelong Led Zeppelin fan, some quick thinking helped him avoid a stairway to heaven. Read Grant’s heart attack story now. ...

Heart attack at 35: Knowing the signs and symptoms

Heart attack at 35: Knowing the signs and symptoms

Heart attack at 35: Knowing the signs and symptoms

David reflects on how his life changed when he had a heart attack at 35 and how he got back on track....

How a pacemaker at 34 saved my life

How a pacemaker at 34 saved my life

How a pacemaker at 34 saved my life

Kim shares the emotional and physical upheaval experienced on her journey to diagnosis and recovery....

The one that took Jan’s breath away

The one that took Jan’s breath away

The one that took Jan’s breath away

Open heart surgery to treat damaged heart valves has improved Jan's overall health....

Maryanne was shocked to find she had a hidden heart problem

Maryanne was shocked to find she had a hidden heart problem

Maryanne was shocked to find she had a hidden heart problem

At first, it didn’t cross my mind it could be something serious. ...

My role as a cardiac nurse

My role as a cardiac nurse

My role as a cardiac nurse

Michelle shares her experiences working as a cardiac nurse at the Royal Melbourne Hospital....

MyMarathon

MyMarathon

MyMarathon

The fundraising race where you set the pace. Run, jog or walk MyMarathon at your own pace during October....

Tenecteplase versus alteplase for stroke thrombolysis evaluation trial

Tenecteplase versus alteplase for stroke thrombolysis evaluation trial

Professor Mark Parsons, Institution: University of Melbourne...

Heart Health Check Toolkit

Heart Health Check Toolkit

Research Directory

Research Directory

Cardiac Rehabilitation for Health Professionals - Patient Resources

Cardiac Rehabilitation for Health Professionals - Patient Resources

Pilbara Aboriginal Heart Health Program

Pilbara Aboriginal Heart Health Program

Pilbara Aboriginal Heart Health Program

The program works with local communities to help improve heart health in the Pilbara....

2021 NSW CVRN Ministerial Awards for Cardiovascular Research

2021 NSW CVRN Ministerial Awards for Cardiovascular Research

Nominations are now open for the 2021 NSW Cardiovascular Research Network’s (CVRN) Ministerial Awards for Cardiovascular Research....

Endorsement of externally developed clinical resources

Endorsement of externally developed clinical resources

Cardiovascular disease (CVD) risk assessment and management

Cardiovascular disease (CVD) risk assessment and management

Absolute CVD risk assessment is an integrated approach that estimates the cumulative risk of multiple risk factors to predict a heart attack or stroke event in the next five years....

Long-term recovery after a heart attack

Long-term recovery after a heart attack

Long-term recovery after a heart attack

Information to help you adjust to what could be the 'new normal'...

Q&A with Dr Lewan Parker

Q&A with Dr Lewan Parker

Q&A with Dr Lewan Parker

Identifying microvascular dysfunction as a novel mechanism of poor health in heart failure patients....

Heart Healthy Dinner Plan

Heart Healthy Dinner Plan

Heart Healthy Dinner Plan

Sign up now and discover delicious, easy to follow dinner recipes. Plus shopping lists, tips and other helpful information to make healthy eating easy. ...

Vegetarian lasagne

Vegetarian lasagne

Vegetarian lasagne

1 hour
Serves 6

Breakfast recipes

Breakfast recipes

Breakfast recipes

Heart healthy breakfasts to start your day right...

Overcoming uncertainty: Bianca Beetham’s heart story

Overcoming uncertainty: Bianca Beetham’s heart story

Overcoming uncertainty: Bianca Beetham’s heart story

Bianca Beetham is 24 years old and lives in Sydney. She is currently waiting for her first open-heart surgery after being diagnosed with hypertrophic cardiomyopathy five years ago....

What is coronary heart disease?

What is coronary heart disease?

What is coronary heart disease?

Coronary heart disease (CHD) or coronary artery disease occurs when a coronary artery clogs and narrows because of a buildup of plaque....

For Professionals: Aboriginal and Torres Strait Islander peoples information and resources

For Professionals: Aboriginal and Torres Strait Islander peoples information and resources

For Professionals: Aboriginal and Torres Strait Islander peoples information and resources

Resources for providing best practice cardiovascular care for Aboriginal and Torres Strait Islander peoples....

For Professionals: Coronary artery calcium scoring

For Professionals: Coronary artery calcium scoring

The National Heart Foundation of Australia Position Statement: Coronary artery calcium scoring for the primary prevention of cardiovascular disease in Australia.¹...

Are you at risk of heart disease?

Are you at risk of heart disease?

Are you at risk of heart disease?

There is no single cause for any one heart condition, but there are risk factors that increase your chance of developing one. ...

Healthy chicken fajitas

Healthy chicken fajitas

20 minutes
Serves 4

Moroccan chickpea tagine

Moroccan chickpea tagine

25-40 minutes
Serves 4

Atrial Fibrillation (AF) clinical resources

Atrial Fibrillation (AF) clinical resources

Resources and clinical information for health professionals...

Fruit and nut muesli

Fruit and nut muesli

Fruit and nut muesli

Tasty recipes to start the day | Breakfast Recipe Booklet

Tasty recipes to start the day | Breakfast Recipe Booklet

Tasty recipes to start the day | Breakfast Recipe Booklet

Have an easy and delicious start to your day. Get your free copy now....

Research shows if you have gum disease, you’re twice as likely to have heart disease.

Research shows if you have gum disease, you’re twice as likely to have heart disease.

Research shows if you have gum disease, you’re twice as likely to have heart disease.

Our research stories

Our research stories

Our research stories

We fund amazing researchers who have important stories to tell...

Medical tests for heart disease

Medical tests for heart disease

Medical tests for heart disease

Learn about the common tests your doctor may want you to have to diagnose your heart condition....

Heart conditions in women

Heart conditions in women

Heart conditions in women

Like men, women can be diagnosed with a range of heart conditions....

Philanthropic investments

Philanthropic investments

Philanthropic investments

Making philanthropic investments through the Heart Foundation can transform Australians’ health. ...

10 ways to get the right balance of fats 

10 ways to get the right balance of fats 

10 ways to get the right balance of fats 

Getting the right balance of fats in your diet can improve your heart health....