What's it like being a woman with heart disease?
What’s it like being a woman with heart disease? Sarah Brealey analyses the results of our exclusive reader survey.
Women are more likely to have difficulty getting heart problems diagnosed. And after diagnosis, they are less likely to get the support they need, according to our survey of Heart Matters members with heart conditions.
Support for carers
One in three women surveyed care for an elderly or disabled family member, compared with fewer than one in four men. Nearly half of women (48%) said they didn’t get the support they needed as a carer or parent with a heart condition. Fewer men (32%) felt this way.
I had children aged 14 and nine and no help and no follow-up care
Woman who experienced complications following a heart attack
One woman said: “I was carer for my mother for 20 years, and shortly after my heart attack, she was admitted to hospital numerous times. I could no longer cope with looking after her but had to fight social services to get extra help.”
Some women with heart conditions had to look after children or grandchildren while also caring for a spouse or elderly parents. One woman with a heart rhythm problem said: “I had two young children and my mother who had dementia was living with us. It was a nightmare. I was always so tired and depressed, with no help and support.”
Women were much less likely to have time to look after themselves – 46% said they did, compared with 67% of men. There is a clear need for extra support, particularly for people who have caring responsibilities.
Mike Hobday, our Director of Policy, said: “We know that social care is seriously under-funded, which has led to over half a million fewer people getting social care in 2015 than six years ago. We’re working with other organisations to campaign for the government to increase funding for social care.”
Women were less likely to feel they had support they needed – 55%, versus 68% of men.
Women felt they had to support family as usual while dealing with health problems. One respondent wrote: “My family were initially supportive but expected me to get better and back to normal in a few weeks.”
Fortunately, I have a wonderful husband who is my carer and we share everything
Woman who is disabled following a stroke
Another woman wrote: “My parents think there isn’t anything wrong and still expect me to run them around and sort out all their problems. Sometimes I feel I’m in a hamster wheel and just wish to get off for a while.”
Women were much less likely to feel supported by their partner – 44%, compared with 64% of men. One woman with heart failure said: “My husband was not supportive and I think he believed I was ‘faking’.”
Another woman, who had a heart attack, said: “My husband could not cope with my heart condition, and decided to leave me for someone else.”
But many partners were caring. One woman wrote: “My husband was my rock and still is. He would sit up with me at all hours when I woke crying because I was scared. He was there from the minute I was admitted to hospital in a coma and for days did not leave my side.”
Among our respondents, a heart condition was more likely to strengthen a relationship than weaken it.
Difficulty with diagnosis
Only 41% of women surveyed said getting a heart diagnosis had been straightforward, compared with 51% of men. The process was “difficult” or “very difficult” for 22% of women, compared with just 13% of men.
My husband used to be my carer. Now he has dementia and I find it very hard to look after him
Woman with heart failure following a heart attack
Women were more likely to be told there was nothing wrong with them initially (10% of women, 6% of men) and to feel their doctor wasn’t listening, (8% of women, 4% of men).
Heart disease kills similar numbers of women and men in the UK, but fewer than a third of our respondents knew this. This lack of awareness can lead people to ignore their symptoms or put off making important lifestyle changes. One woman who needed a heart bypass wrote: “As a non-smoking woman, I had no idea that I was at risk in my 40s.”
Mike Knapton, our Associate Medical Director and a GP for more than 20 years, said: “This survey suggests a significant number of people don’t think their symptoms could be related to heart disease and so may never mention them to the doctor. Heart disease affects around 3.5 million UK women – so if in doubt, just ask.
“It’s also critical for doctors to make an accurate diagnosis. The key is listening to the patient, interpreting the symptoms and providing clear advice.”
Support in the workplace and consistent access to cardiac rehab could also help people living with heart conditions.
With the right support, life can continue after a heart event. A mother-of-three who has suffered heart rhythm problems and high blood pressure for 40 years wrote: “I refuse to give in. I get great support from my doctors. My medication has been increased, but I carry on with my life – I run three times a week, do keep-fit classes and have just turned 79!”
Want to tell us about living with a heart condition, being a carer or getting respite care? Email us at HMeditor@bhf.org.uk or write to Heart Matters, British Heart Foundation, Greater London House, 180 Hampstead Road, London NW1 7AW.
Our survey was based on 1,923 Heart Matters members with a heart-related condition, surveyed online in July 2015.