'They live in fear': The mental health impact of living with a mysterious heart condition (2024)

Jane Maguire was a self-described gym junkie when she first experienced "overwhelming" chest pain in the late '90s.

At the time, she didn't think it could have anything to do with her heart.

"Instead of ringing the ambulance ... I rang a girlfriend from the floor," she says.

Jane was 35 and active. She didn't have any of the known risk factors for a heart attack, like smoking or a poor diet.

To the disbelief of doctors at two hospitals, tests confirmed Jane had suffered a heart attack.

"I ended up leaving with a diagnosis of a rare, unexplained event," Jane says.

It would be years before Jane, who is now a professor of nursing at the University of Technology Sydney, got an answer — she had experienced a spontaneous coronary artery dissection (SCAD).

What is a SCAD?

A SCAD is a potentially deadly tear in the wall of a heart artery.

It is rare, accounting for between two and four per cent of all acute coronary syndromes, which includes heart attacks.

However it's the cause of heart attack in 25 per cent of women under the age of 50, and the most common cause of heart attack during pregnancy.

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The symptoms can range from mild chest pain to full-blown heart attack symptoms, like shortness of breath, dizziness and tightness in the chest.

While described as sudden, Jane says there had been signs something was wrong before the extreme pain set in.

"It was only in retrospect I recognised that's what it was," she says.

"As women, we are particularly good at brushing off our symptoms."

While men can experience SCAD, they only make up about 10 per cent of cases.

In men, exercise is a significant trigger. In women, aside from pregnancy, risk factors include stress, a rare vascular disease called fibromuscular dysplasia and other connective tissue disorders.

However for many women, there is no obvious cause.

"It's not a lifestyle condition," says cardiologist Robert Graham from the Victor Chang Cardiac Research Institute.

"[These women] are often fit. They're often lean, they don't have diabetes, they don't smoke," Professor Graham says.

Which makes predicting SCAD near-impossible.

The condition does seem to have a genetic component, which Jane discovered when her sister also experienced a SCAD.

"Now I'm very concerned about my two children, who are young adults," Jane says.

"I encourage my daughter to go to the doctor regularly."

Hard to diagnose

It's common for a SCAD to be misdiagnosed, or missed entirely, because it affects seemingly healthy people.

Further complicating matters, the tests typically done when someone comes into hospital with chest pain can be harmful.

Cardiac catherisation, where a thin tube is threaded through a blood vessel into your heart, can make the SCAD worse.

So can a stent, a tiny coil-like device that is typically used to prop arteries open.

When left alone and monitored, Professor Graham says the tear in the artery can repair within a matter of weeks.

"The bad news is they can recur. And they can recur in up to 15 per cent of cases."

They can also recur at any time. One of Professor Graham's patients had a SCAD in 2007, and just had another 17 years later.

"[SCAD survivors] live in fear because they don't know whether they're going to get another one."

An isolating experience

When Jane got out of hospital she was referred to cardiac rehabilitation, but she says the program back then wasn't appropriate for her.

"There I was with all these people, late 70s and 80s, who were struggling to get on the treadmill. And [the treadmill] was my favourite place."

She was provided with psychological support, but faced the same issue.

"I remember seeing the psychologist once and she just kind of shook her head and said, 'I don't know what to advise you'."

Jane didn't need to make lifestyle changes. Instead she wanted to get back into the lifestyle she had before — caring for her two children, working and going to the gym.

"It took me a long, long time to get the confidence back," she says, "it was all very lonely, actually. Very isolating."

"I was in that age group where everyone I mixed with was healthy ... and I'd just had a heart attack."

While cardiac rehabilitation has evolved since 1998, Professor Graham says there's still an absence of research to guide SCAD survivors in their physical recovery.

"We rely on the advice we give for other vascular disorders – to limit the amount of weight they lift."

Specific psychological support for SCAD survivors is still an issue, but there are places to get help.

Heart attack impacts mental health

Depression and anxiety are common after a heart attack, regardless of the cause.

However SCAD patients report higher levels of mental distress than general cardiac patients.

Post-traumatic stress disorder is also more common, affecting up to 1 in 3 people who go through a SCAD.

"Because the recurrence rate is relatively high, there's a lot of fear and uncertainty," says Barbara Murphy, who is the associate director of the Australian Centre for Heart Health and focuses on the psychosocial consequences of cardiac conditions.

"SCAD survivors typically avoid doing the things they've always done and loved — they are living in fear."

The centre runs a cardiac counselling clinic to help patients with their mental health in the aftermath of a cardiac event.

A major component of that support is acceptance and commitment therapy (ACT), which acknowledges the fears patients might have about SCAD recurring.

"We're not trying to challenge their beliefs as being unrealistic, we're actually trying to help them accept and work with those experiences," Dr Murphy says.

The clinic also tries to bring survivors of this rare condition together for group therapy.

"Sometimes in the groups we have SCAD survivors who are further down the track and they're still doing ok," Dr Murphy says.

"They've come to terms with it, and that helps the new patients see there is life after SCAD."

For people who can't access the clinic, there are also not-for-profit organisation such as SCAD Research, set up by Australian SCAD survivors, and SCAD Alliance, which includes resources and links to online survivor groups in Australia and across the globe.

Jane has sought further psychological support, and says having a cardiologist with a person-centred approach has helped.

But she worries many SCAD survivors are still struggling in isolation with the physical, emotional and financial fallout from having a heart attack at a young age.

Even with her experience in nursing, Jane says "navigating the system was a nightmare".

She hopes that increased awareness of SCAD will mean more support for survivors and their families in the future.

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