New website aims to overcome the loneliness of heart-disease sufferersby Nicky Pellegrino
A website that tells the stories of heart-disease patients aims to help others to recover.
“I thought I was too young,” says Dzaferic, 54. “I hadn’t realised there was a family history of heart disease. It was only when I came round after having an angiogram and was told I’d need open-heart surgery that it really clicked.”
Dzaferic’s story is among those included on the Journeys website, an initiative that is part of a move to better support the 172,000 New Zealanders living with heart disease.
The Heart Foundation asked hundreds of patients and their families how it could best help them. “Although they got great clinical care, many felt alone and uncertain,” says heart healthcare manager Kim Arcus. “We learnt of the isolation someone can feel when recovering from a heart event. They really wanted to hear from people who had been through what they had.”
In response, the foundation created the website so patients and their caregivers can share the experiences of people in similar circumstances. Although it may seem like no more than warm fuzzies, such emotional support is increasingly seen as an important part of the recovery process. It is part of the whole-person approach to healthcare, says Galia Barhava-Monteith, who trained as a psychologist and is completing a PhD in people-centred wellness. She has insights into the importance of caring for the mind as well as the body from her research and also from personal experience, as she suffers from a serious auto-immune syndrome, Churg-Strauss.
“When you’re diagnosed with a chronic illness, everything you believe about yourself ceases to be true,” she says. “All of a sudden you’re a sick person, so what does that mean? The way people treat you has changed. You might not be able to participate socially in the way that you used to. In your relationship, you may have been the strong one, and now you need to be cared for. It really shakes your world in many ways.”
Barhava-Monteith’s PhD research involved interviewing people with conditions similar to her own and she found it helped. “The more stories I’ve heard, the more I feel I’m part of a community and it’s a good feeling.”
Journeys is designed to have the same sort of benefit for sufferers of heart disease. “You can read it and know you’re not alone, and that’s a massive thing,” she says.
People who are unhealthy are often judged harshly and made to feel as if they brought it on themselves; Barhava-Monteith recalls being asked if she thought her own illness was the result of her extremely busy life. They also come up against the attitude that sickness is to be battled and beaten, which is tough when you are coping with ongoing symptoms. You may not look sick, may live in an isolated area or may be relatively young and find your friends don’t understand what you’re going through. Being connected to a community of people grappling with the same issues is an important part of finding a way to live with a chronic illness.
“People who have been there and done that may have relevant knowledge. Little things can make a difference and you can learn strategies that doctors, who have never been there, won’t come up with.”
A year on from her surgery, Dzaferic says she had always assumed that, as a nurse, she understood what happens after a heart attack. “It didn’t sink in what people go through after a quadruple bypass. That you’re cut open, that you’ve got this wound, there’s a lot of pain and you think you could have died, that your life expectancy is not what you thought it was. All those things run through your mind.”
She has learnt the value of contact with fellow heart-attack sufferers. “They’ve had similar problems – not just the pain but the emotional turmoil. Hearing other people’s stories makes what you’ve been through more normal. It just makes it easier to cope.”
This article was first published in the May 6, 2017 issue of the New Zealand Listener.
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