How to cope when you look well, but don't feel well
A heart or circulatory condition can mean you look well even when you don’t feel it. Katherine Woods explores how this can lead to a lack of understanding, and shares tips for talking about your condition.
“I’m lucky – I’m not on any medication and most people would never know there’s an issue,” says Rebecca Halford. Rebecca was born with multiple heart defects and needed major heart surgery at just 36 hours old.
“My heart condition is hidden, so people can’t see what I’m living with,” explains Rebecca, now 29.
Coping with limitations
Since birth, Rebecca has had further surgery to reopen her pulmonary valve and close a hole in her heart, and is likely to need more procedures in the future. She enjoys leading an active life as a member of Dursley Running Club and Triathlon Team near her home in Gloucestershire. Rebecca also has a personal trainer to help maintain her fitness and works full time in marketing for an engineering company. But she still has to be mindful of her limitations.
“I check everything with my consultant. I recently told her I want to do the London Marathon and she thought I was mad. She told me to limit myself to a half marathon, so I’m going to do two half marathons in the same year to make a whole one!”
On a day-to-day basis, it’s also harder for Rebecca to do things other people might take for granted. “If I’m cold, I go very blue and need to get somewhere warm and have a hot drink. I watch rugby outside in the winter with my family and they can always tell when it’s time for me to go in.”
Lack of understanding
Rebecca has lived with her heart condition since birth and has developed coping mechanisms to work around her limitations. “But that means people see me living a normal life, and they think I must be fixed,” she explains.
“It’s more of a problem when I meet people for the first time. I try to explain that I’m probably never going to be fixed, but they don’t seem to listen. It can be really frustrating.”
Paul Bennett is a BHF-funded Professor of Psychology at Swansea University and has helped patients to deal with the challenges of looking well when living with a serious condition.
“It’s a very common experience; if someone feels unwell or limited in what they can do and the people around them don’t respond to that, then they can feel frustrated, angry or depressed,” he says. “People in general have quite a short-term view of illness and don’t always appreciate that there are long-term consequences, especially if the illness doesn’t come with obvious physical symptoms. There’s an expectation that if you’ve had treatment then you should be better.”
Rebecca agrees, but also puts her experiences down to a lack of awareness about congenital heart disease, partly because advances in treatment – many of them thanks to the BHF – have meant people with these conditions are much more likely to live to adulthood. “We’re the first generation living relatively normal lives with our conditions, so most people haven’t encountered anyone like us before.”
Communication is key
My heart condition is hidden, so people can't see what I'm living with
Rebecca believes the best approach is to be open with people. “It’s nothing to be ashamed of, and the more people know about me, the easier it is for them to spot the signs of when I’m not quite right. I’m usually very chatty but when I’m feeling unwell or tired I become very quiet.”
Professor Bennett agrees that it’s best to be open and clear about the problems you’re facing: “Dropping subtle hints won’t tell the full story, and can even be irritating to some people and make matters worse.”
He recommends picking a quiet moment to have a conversation about your condition, rather than in the heat of the moment when you might be feeling frustrated or struggling physically. “And remember that most people won’t understand technical terms, so try to use simple language to explain your condition and how it affects you.”
Professor Bennett adds that it might help to have a rehearsed mantra to repeat in your head when you’re dealing with difficult situations or unhelpful comments. “For instance, you could say to yourself: ‘Sometimes other people forget about my problems and I’m not going to take it personally.’”
Controlling your breathing can also help in frustrating situations. He says: “Try breathing in slowly, holding the breath in your lungs for a few seconds, then breathing out slowly.”
Rebecca finds her own mantra helps to keep things in perspective: “My motto is ‘My heart, my rules.’ I know my body best.”