For some people we interviewed, having atrial fibrillation (AF) made little difference to their working lives. In jobs of a more sedentary nature (inactive), or with a degree of flexibility or independence, AF did not need to be an issue with supportive managers and colleagues. Dave accepted that AF might have had a bigger impact if his job involved more physical labour than ‘reading off a computer or providing my opinion’. Others had retired before the onset of AF. Eileen, a former nurse reflected, ‘it wouldn’t have been compatible with nursing – what would they say on the ward if you said “Excuse me, I’ve gone into AF”?’
Work as a finance director has given Geoff structure in his life and helped him psychologically to adapt to AF. His boss has been very supportive.
Work as a finance director has given Geoff structure in his life and helped him psychologically to adapt to AF. His boss has been very supportive.
The very fact of working has been very good psychologically, because getting up at a regular time and coming to work in a formal dress and mixing with other people has been very good for me, because I think, if I’d been at home being depressed about this situation I think I could have got much more ill, if you like. And, in fact, our GP says that very same thing. People once people retire they often get ill because they’ve lost the purpose, they’ve got no other interests and their status is their world at work. Now that in the slightest bit, doesn’t bother me. I’m not bothered about the status and because I’ve done so many things, it doesn’t worry me at all. It’s actually having the structure and getting up at the regular time, and having to make an effort to work with people in a normal situation. And even though I’ve often been feeling grotty and my chap I work for, who always has admired me for that at keeping going knowing that I feel really pretty lousy, has sort of kept me going. If I’d been at home, what would I have done? I’d have just been moping around. I might have gone to bed but what would it have achieved?
For some, however, a diagnosis of AF could have a ‘tremendous impact’ on their working lives. James was unable to work for almost a year following a stroke due to undiagnosed AF. When he did return to work, he felt things were different and his company covered him ‘in cotton wool’ and ‘never let me get back to where I was’. Chris Y took early retirement a year after having a TIA (minor stroke) – he felt the stress of his job was not helping his AF. Though George Y has no regrets, the danger of a stroke, one of the ‘most debilitating, sudden, life changing disabilities that anyone could be given’ was enough to convince him to retire from teaching. (For more see ‘Atrial fibrillation, stroke and blood thinning medication’).
In her forties, Ginny spoke of the ‘devastating consequences’ AF had on her career.
In her forties, Ginny spoke of the ‘devastating consequences’ AF had on her career.
You can’t really go applying for, you know, your, a job and say, “Oh, yes, you know, I’m fit and healthy.” When you’re actually seeing a cardiologist. You know, you just can’t do that really. So I’ve gone really through the going on for sort of five years now thinking, “Well, this hasn’t really impinged on my life.” It’s impinged on my leisure I suppose but it hasn’t really impinged on my life and then I thought, “Well, hang on a minute. Yes, it has. It has actually.” It’s impinged greatly on careers and at a stage in my life when I needed to be to be moving on and applying for better jobs and such things.
I literally, left one job because I didn’t think that I could cope with the stress that was going on in the job after I’d had my first ablation. I felt that I had to protect myself from that that environment and protect my heart from that environment because I thought by putting myself back into that environment, after having the ablation, I would go possibly back into AF or something would happen.
Struggling with the effects of AF and ‘hangovers’ from her medication, Gail reluctantly decided to give up her part-time work.
Struggling with the effects of AF and ‘hangovers’ from her medication, Gail reluctantly decided to give up her part-time work.
But on the two days I was working, I was having to get up at half past six and drive twenty miles to the place where I was working and so that’s [laughs] that’s a bit of an effort in itself. But if I was having if I was having AF or I was having hangover effects from the flecainide, that was even more difficult, and I was having to sort of kind of pushing through a fog, if you like, to kind of get going for the for the start of the work. So I was aware of that, that it was, you know, a bit of a struggle and, whilst doing the actual work I was fine. It was it was a bit like, you know, in a social situation I seem to be able kind of click into a different mental place but it was the bits round the edges that were more difficult, the sort of writing records and the doing the admin stuff and things that I felt were starting to feel like a struggle. And so, you know, I suppose there were a goodly proportion of the times that I was working when I would be would be, have a flecainide hangover or have AF. So, I don’t know, maybe thirty to fifty per cent of the time or something and I was just beginning to wonder if I was, you know, giving my best and whether it was okay to be doing the doing the, you know, struggling on like this.
Being self-employed, Suzy had to make changes to her working life as her symptoms worsened. She found it difficult to travel into the city to meet her clients.
Being self-employed, Suzy had to make changes to her working life as her symptoms worsened. She found it difficult to travel into the city to meet her clients.
It impacted quite a lot in the last two or three months before the ablation because it became symptomatic more symptomatic more quickly and I didn’t quite recognise my life anymore. It was quite scary and also I’m self-employed so when I don’t work I don’t get any money, and I’ve got a big mortgage in [area of city] and stuff. So I wasn’t able to work in [city], which is about a third of my income. I just had to bite the bullet and say, “I just can’t do that for now.” My clients could either come and see me in [area of city], which is easier, was easier for me to get to, or I offered two or three of them to do Skype sessions, so I was able to do some work that way, but it wasn’t ideal. I found that on one of the last days, I did go into [city]. Normally, the Tube, the rush hour, the stairs up and down, Tube stations are fine. I’m just used to them. I’m sort of one of the people in the flow who just stomp stomp along and don’t take any prisoners on their way. But suddenly I was like one of those elderly people clutching onto the railings, sort of saying, “Okay. I’ve done three steps. Now let me stop and take three breaths and wait a bit.” And people jostling me and being impatient, why was I standing in the way? And it was very difficult not to be become quite stressed and annoyed with myself when that happened, because I was one of those people. I wanted to be, there’s a strong pull to be one of that crowd who just rushes past. It feels very odd to be the one who has to slow down.
AF symptoms can be invisible and not always obvious to employers or colleagues. (For more see ‘First signs and symptoms of atrial fibrillation’ and ‘Diagnosing atrial fibrillation’). This can add to the challenges people face. Support and understanding from employers is crucial in helping people return to work after episodes of AF.
Chris X spoke of the difficulty of convincing his employers of the seriousness of his condition.
Chris X spoke of the difficulty of convincing his employers of the seriousness of his condition.
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.”
So there’s almost a disbelief, in some ways. And another manager said, “Well.” you know, “If you’ve got.” And I’ve got this in in my write-up I did for the AFA, you know, "if you if you fell off your chair and were passed out on the floor and an ambulance came and they carted you off on a stretcher then they’d believe you". You know, people who die from heart attacks get conference rooms named after them. You know, but there are a lot of other conditions and AF is one of them that don’t get properly recognised and allowed for in the workplace and I think that’s almost, in a sense, more important than family, in some ways. It’s certainly of equal weight, I would say.
Gail explained how employers may find it difficult to accommodate the unpredictable nature of AF.
Gail explained how employers may find it difficult to accommodate the unpredictable nature of AF.
And with employers, I mean it’s the same with any other condition where you, you know, it can vary from day to day and week to week. It’s really tricky because it might, you might be perfectly fine one week and then not the next and that’s really hard for work, you know, workplaces to accommodate that. I don’t know what the answer to that one is, but just perhaps some awareness and some back-up would be good.
Some people we spoke to also highlighted the difficulties and frustrations associated with managing long term sick leave and correspondence with authorities.
On long term sick leave from his job as a cleaner, Glyn spoke of the difficulties of convincing the authorities that he was unfit for work.
On long term sick leave from his job as a cleaner, Glyn spoke of the difficulties of convincing the authorities that he was unfit for work.
I’ve been on sick note for about fifteen months. In fact, I’ve had a letter this week saying I’ve got to go down to the to the local job centre next Monday afternoon for a job assessment. But the problem with that is, I mean I could go down there, if I don’t get any AF, how are they going to know why I don’t go to work and I’ve got to explain to them with a doctor’s assessment, I’ve got to get a letter from my GP, explain what the AF is and what is has condition on my life. But it’s hard to explain to them. I get up in the morning and I may have a two or three hour attack and as long as I have AF, I can’t go into work with it. You can’t work when you’ve got a pulse of a hundred and twenty, hundred and thirty. It’s impossible. You can’t work with it, as I say, so you can’t do anything, so you can’t go into work. So it’s not as if I don’t want to go into work. I want to work. I’d rather go into work than be stuck in the house all day, but it’s no point in me going into work if I, after about half an hour, I’ve got to sit down in complete exhaustion, dizzy spells, tiredness and palpitations. There’s just no point. I’m wasting my time going in and they’re wasting their time having me there, you know, to be quite honest.
Unable to work for ten years due to his AF, Roger described the impact of changes in government policy designed to get people off benefits.
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Unable to work for ten years due to his AF, Roger described the impact of changes in government policy designed to get people off benefits.
I’ve got the situation with the Department of Work and Pensions, who want to put me back onto their work programme now. I’ve filled in a form saying exactly when I’m available, what I can do health wise and how it restricts me, but I’ve got to go through the trauma and the stress and anxiety of being messed around by what is really a bureaucratic exercise. Okay, they will get a lot of people off benefits. I can obviously see what they’re trying to do, and their objectives, but for people who are struggling with their life and I don’t like being trapped in this life at all, it’s very restricting.
Having AF has meant a rearrangement of working lives for some people we interviewed. Some have been unable to continue working at all because of symptoms, others have decided to work part-time or to retire. Inevitably this has had an impact on their finances.
Unable to work, Glyn spoke of the effect that AF has had on his quality of life.
Unable to work, Glyn spoke of the effect that AF has had on his quality of life.
I’ve lost thousands of pounds in wages because I haven’t been able to work and it has it has a detrimental effect on your on your lifestyle because if you’re getting less money in the household every day, or every week rather or every month even, you get less money to spend on bills, less money to spend on your on the luxuries in life and so basically, you’re restricted to what you can do, you know what I mean. It has that much of an effect on your life, you know.
Chris X spoke of his regret at retiring early due to his AF.
Chris X spoke of his regret at retiring early due to his AF.
I’m at the point now where I wish I’d never retired, and I mean if I had been referred before I retired, if I’d received appropriate medication before I retired, I needn’t have retired. I could have carried on doing the job that I was doing, and a job that I enjoyed doing as well. And now, actually, apart from anything else, financially we would have been a lot better off, because my final salary would have been higher and my numbers of years’ service would have been higher
