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’.
Chris X advised people to carry on with their life, learn about AF, and seek reassurance from others.
Chris X advised people to carry on with their life, learn about AF, and seek reassurance from others.
Age at interview: 65
Sex: Male
Age at diagnosis: 50
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Don’t panic. Don’t get depressed. It can be dealt with. Provided it’s looked at and looked after it’s not going to kill you. You can carry on your life, generally or you may have to shift back a gear a bit, but just go with it. It’s very different, when you’re a patient, to dealing with a patient. Often, as a patient, you can be much more accepting of it because it’s you. What other things would I tell them? I’d I would tell them to say, don’t take no as an answer, dig your heels in, be difficult if you have to be, make sure that you are dealt with in a proper way and that things are properly explained to you in terms of diagnosis, what the condition is, what options you have, what the side effects are of any medication and again, what alternatives there are. And I would particularly advise them to learn about the subject. Just become an intelligent patient. People react very differently to that. Some, like me, with a naturally nosy and inquisitive nature and a scientific mind want to want to know a lot more about it. You know, I find the more technical sessions at Europe AFA absolutely fascinating with the new research and so on. Some people they would say, “What? What are you doing that for? You know, just go to the doctor and take what he says.”
So it’s, I think it depends on individuals. I think one of the one of the main things, one of the things that I’m always doing on the AFA forum is reassuring people. I think it’s terribly important for people to have reassurance from people who’ve, if you like, been on the on the same path and it’s, tell them, be honest with them and say, “It can be a very bumpy road. It can be a very uncertain road.” But generally, after a period of time, things do get better.
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.
Nuala likes to know as much as she can about AF so that she can ask the right questions and make informed decisions.
Nuala likes to know as much as she can about AF so that she can ask the right questions and make informed decisions.
Age at interview: 60
Sex: Female
Age at diagnosis: 48
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I would say find out as much as you possibly can about it. Get to know your own body. Get to know the things that causes it or that initiates it. Ask as many questions as you can. Don’t just take medication blindly, find out what the side effects of the medication are and go on recognised internet sites and find out if there are any other possible side effects and particularly if it’s a new drug, you know, somebody is this a drug trial, make sure that you’re aware of if it’s a drug trial or not. But to be very, very much aware and find out as much as they possibly can and then when they going for consultations, have a list of questions they want to ask rather than going in there and forgetting about it because you’re not going to maybe be back for probably three or four months. But if they can do things that can reduce the episodes and whatever that is, whatever healthy changes that they might do it but, as well as that, push and see if you can get as much information as you possibly can. That’s my way of dealing with it, everybody is different. But I like to know as much as I possibly can so that then I can make informed decisions rather than maybe and I’m not and anyway because doctors have so many patients and nurses and they have to see to them all and so they’re doing what they’re doing the best that they can but if you’re not happy with it, you don’t have to accept it. And get second opinions as well.
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’.
Chris Y kept a diary detailing his episodes of AF, which his GP found useful in monitoring his condition.
Chris Y kept a diary detailing his episodes of AF, which his GP found useful in monitoring his condition.
Age at interview: 64
Sex: Male
Age at diagnosis: 62
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I had actually, before then, started to keep a diary of when the when I was, well, the arrhythmia, which subsequently became known as atrial fibrillation, so I’d put the time it started, time it stopped every day, and I found that was very useful and my GP said, “That’s really useful” and I gave him a copy and all the rest of it and wrote it all out. So, you know, if anyone else is going through that sort of thing, a diary really is very, very useful.
Jeni pointed out the need for good communication between patients and health professionals.
Jeni pointed out the need for good communication between patients and health professionals.
Age at interview: 41
Sex: Female
Age at diagnosis: 40
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Talk to other people. If you have questions, ask. Ask your GP. Ask your consultant. Take a little, before you go for an appointment, have a little card with all your questions on because you might go in and suddenly go blank. Always take somebody with you because every time you go to the consultant they might tell you things and you might not be listening to it properly. You might hear it differently, whereas if you’ve got somebody else with you, they’ll actually hear what they’re saying as well. So they might actually understand a bit more and just be open and, you know, the more information you’ve got, the better informed and the healthier you can be.
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.
Jenny, whose husband had a stroke due to AF, advised people to take one day at a time.
Jenny, whose husband had a stroke due to AF, advised people to take one day at a time.
Age at interview: 55
Sex: Female
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Take one day at a time. And that sounds a really like trite thing to say, but if you let your mind run ahead to what might happen if you don’t get that appointment, or if you do and while he’s there he has the stroke again blah blah blah, you would be in an, you would be in a nut house. You literally have got to think, “Right, tomorrow, we’re going to go to the hospital. He’s going to get physio.” That’s it. And then when that’s happened you think, “Tomorrow we’re going to go to the hospital and they might agree to do the ablation.” And that’s it. Just take one day at a time. If you if you let your mind gallop to what might happen in six months’ time, you just couldn’t cope with it.
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.
Jeni talked about how frightening an AF attack can be for others.
Jeni talked about how frightening an AF attack can be for others.
Age at interview: 41
Sex: Female
Age at diagnosis: 40
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Don’t be scared. It must be must be quite frightening. I hadn’t realised because when I had my major attack, I hadn’t realised how scary it must be for people to witness it because the look on my colleagues’ faces when I was carted off in the ambulance with the oxygen mask on and the cannula in my arm and looking very white and pasty and, of course, at the time, they didn’t know what it was. They looked very scared and it wasn’t until I got back to work and one of my colleagues, who used to be a cardiac nurse, she came down and gave me a big hug and she said, “You do realise, Jen, that your whole body was shaking and you were grey.” And I said, “No.” Because I was just coping with the situation and to other people, it must have been quite frightening and (you need) to reassure them.
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’.
Eileen highlighted the importance of responding to the ‘patient’s lead’ rather than being over-protective.
Eileen highlighted the importance of responding to the ‘patient’s lead’ rather than being over-protective.
Age at interview: 63
Sex: Female
Age at diagnosis: 53
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Be swayed by the patient. Try not to molly-coddle them too much. I felt swamped and it’s a frightening enough procedure anyway without or frightening enough condition, without knowing that everybody else is scared stiff as well. So you’re trying or I found I was trying to protect them probably the wrong way, by not telling them what was going on. But if I really told them how I was feeling, they’d have been even more scared. So be there because a lot of the time you look fit and healthy. I mean people say, “Oh, you’ve got that? You look so well.” So you might look well, it’s sort of partners sort of try and read the signs I think. Be aware if they say they’re tired and they’re sitting down, it might be because they’ve gone into AF and just don’t want to tell you. Don’t want to make a big thing because don’t want to be swamped, wrapped in cotton wool or over protective. Be supportive, I think. Follow the patient’s lead where possible.
Martin praised his wife for letting him get on with his life.
Martin praised his wife for letting him get on with his life.
Age at interview: 73
Sex: Male
Age at diagnosis: 71
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My wife just, she’s an amazing woman and is very supportive but she she’s an ex-nurse, but she’s not a fussy sort and she is I think she is concerned. I think she is but she’s sort of doesn’t make a fuss, which is so helpful. You know, the last thing you want is someone fussing round you and, “Be careful and don’t do this.” And so I went down to the [holiday location] to do the landscaping, and she takes the view, “Well, you know, it’s what he wants to do. It’s up to him. He’s running his life.”
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’).
Chris X’s manager found it difficult to accept the seriousness of his AF and the need for time off work.
Chris X’s manager found it difficult to accept the seriousness of his AF and the need for time off work.
Age at interview: 65
Sex: Male
Age at diagnosis: 50
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People look at you and you look very normal. You don’t you don’t necessarily look ill, and people don’t accept that you’ve got, what is actually, quite a serious heart problem. That applies to the workplace and to managers and even to company doctors. I’ve been to been round them all and a manager said to me, “Why are you having all this time off? You know, what’s? You know, this this isn’t acceptable.” And I said, “Because I’ve got this condition, this is what’s happening.” And it was someone that actually I’d, promoted above me because I didn’t want to do a managerial job and she said, “What’s wrong with you, Chris?” You know, “I can’t see anything wrong with you.”
Gail stressed the need to find a balance between encouraging people with AF to do things while not pushing them too far.
Gail stressed the need to find a balance between encouraging people with AF to do things while not pushing them too far.
Age at interview: 62
Sex: Female
Age at diagnosis: 44
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Even though someone appears perfectly okay, they might be feeling quite rough at times. And it’s a very individual thing how, you know, how you might want people to respond to that. But not to make you go up hills when you’ve got it [laughs]. We did an experiment a few weeks ago, my husband sort of, well, he did an experiment. He said, “Come on, let’s just see if you”, because it started on the way up a hill, “Let’s just see if you can carry on, get to the top. Come on.” [Laughs]. So yeah, to make sure you ask people what they want to do when they’ve got it and whilst being encouraging and not, you know, not encouraging them to be become an invalid, at the same time, not pushing them to do what they don’t feel able to do. What else?... I suppose there’s the thing about unpredictability and that planning stuff, you know, being aware that plans might have to change or that someone you know with AF feeling off-colour accommodated in some way.
Roger explained how people with AF can get irritable when they are tired.
Roger explained how people with AF can get irritable when they are tired.
Age at interview: 60
Sex: Male
Age at diagnosis: 50
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When people get tired they also get ratty [laughs] and impatient and because it’s a normal time of day and their partner is in good health, the patient may well be actually right at their limit of endurance to that point of time in the day. And you don’t get a light come on to warn people you are not feeling well. You just bite, and that’s something that in the patient side of me is definitely affected, to what it used to be and it’s frustrating for me. It’s frustrating for the people around me and I will make people very aware of and, that it’s something to watch out for it, but it is something that, depending on how AF affects them, that’s the type of things that can happen. But they’re not being awkward and they’re not going to show anything outward but their head could be way out.
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