Atrial fibrillation

Messages from people with atrial fibrillation to others

Living with atrial fibrillation (AF) places people in a unique position to pass on advice to others. We asked people to pass on messages to other people with AF, as well as partners, family and friends.

Messages to others with atrial fibrillation
In sharing their experiences, people we interviewed hope to reassure and help others who have been diagnosed with AF to adjust to and live with their condition. A recurring message was not to panic. They stressed the need to get AF in perspective, rather than becoming a victim through letting it dominate their lives. As Bob said, ‘AF is in my life, but isn’t my life’. Dot described AF as ‘an entirely manageable condition that you can live with’; David X stressed the importance of finding ‘strategies to get around the problem’ and live as normal a life as possible. Having a positive attitude was cited as important, although Carin warned ‘it will take a long time to come to terms with AF.’ Rather than letting AF dictate your life, Eileen stressed the importance of making adjustments and learning to live with it: ‘it isn’t the end of the world but you’ve got to get yourself onto a good team that either you can talk to or that will understand’.
People we spoke to emphasised the need for early diagnosis and treatment, rather than ignoring symptoms. (For more see ‘First signs and symptoms of atrial fibrillation’). As Glyn explained, ‘the longer it goes on the harder it is to treat’. Keith urged people to go to the doctor straight away if they experience symptoms rather than ignoring it: ‘it’s quite obvious something is amiss and that’s the time to go to the doctor’. Some people advised others to assess what might be personal triggers for AF, to avoid stress, and keep fit. A key message people wished to pass on was the importance of being well-informed about the condition, becoming a ‘partner’ in their care and speaking up if treatment was not working. Marianne stressed the need to be proactive and to ‘find out all you can and act on it’. Janet’s advice was to ‘get plenty of information’ and ask questions before accepting any treatment.
Geoff and Chris Y advised people to seek information on the internet, but to be aware that not all information may necessarily be accurate. Martin suggested asking to see an arrhythmia specialist. Eileen emphasised the importance of ‘getting yourself on a good team you can talk to’.
Some people recommended joining a support group and sharing experiences with other people with AF. (For more see ‘Sources of information and support for people with atrial fibrillation’). This had helped some people to feel they were not alone. Paul wore a bracelet engraved with his date of birth and blood group to alert people to his AF.
Messages to partners, family and friends

People spoke of how frightening AF symptoms can be to people around them. They stressed the need to reassure partners, family and friends that they were OK. As with any illness, Ginny emphasised the importance of friends and family being there ‘on the end of the phone’. Elisabeth X explained how AF left her feeling ‘pretty tired and a bit scared’ and in need of support.
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People we interviewed felt that it was important to tell others about their condition rather than trying to protect them. They welcomed support and understanding but were adamant family and friends should treat them as normal and not ‘fuss’. There was a danger, as Nuala pointed out, of being ‘pigeon-holed as having a bad heart’ and constantly asked ‘are you okay?’ despite being able to manage. Anne advised looking after the person but not to ‘wrap them in cotton wool’ or ‘treat them like an invalid.’ Similarly, Mary cautioned, ‘Don’t make (the person with AF) feel different or ill – it’s not a disease like cancer or something like that – it’s just a nuisance’.
At times there was a mismatch between how people looked and how they felt. Chris X reminded people that although a person may look okay on the outside, they may actually be feeling quite unwell. This could lead to confusion with partners, family, friends and employers not fully understanding or accepting the impact AF could have on people’s lives. (For more see ‘Impact of atrial fibrillation on work’).

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