There have been times when the doctor has suggested I should take time off work but my line manager, current line manager, I’ve gone to her and said, Look, can we get me some temporary parking on site so I don’t have to walk Because I was sort of ten minute walk from where I parked to get to work, uphill, which is not good when your asthma’s bad. And shes been able to get the parking people down town to agree to a sort of disabled, temporary disabled parking space. So I can drive onto site, I get into my office. When I’m sitting there isn’t a problem.

So I just don’t move around very much when I’m feeling like that.

So I can carry on working.

And so if I’m stressed and I have an attack like, I mean, I’ve been working a couple of times and I have my inhaler but I needed to kind of sit down and stop. But I was doing something where I was meant to be walking around and so I kind of called in and said, Well, you know kind of like, because it was over a radio system and so I was like I really don’t want to advertise to everybody on the radio system that I’m having an asthma attack right now. So I was like [siren] Is it OK for us to come back for a welfare break? And they went, No you’ve not been out long enough, you need to do your full, you know, you need to do a longer shift before you can have a break. And I was like, I need to come back.

So, I mean, we were working in pairs and my colleagues went back on the radio and said, No, I think it is absolutely imperative [laughs] that that we come in for a welfare break right now. And luckily the people that were, that were on the radio, they kind of went, Ah, right OK this isn’t just you know, you being lazy, theres some other thing that you don’t want to put over the radio that means you need to come back. Which was, I mean, it was good and bad because it, it did mean that people knew there was something up but they didn’t know what it is was. Which is a bit annoying. And it meant that when we got back to the base everybody was like waiting and going Are you OK? And it was, that was kind of nice but also I just wanted to be left alone a bit [laughs].

You don’t really want all that attention.

No, I didn’t want everybody kind of crowding round me. I just wanted to sit down, take my inhaler, get my head together

And then just get out again. And everybody was like, Oh, are you sure you’re OK? I said, Yes. Leave me alone.

So do you find you’re often, you know, so if people know that you’ve got asthma or see you having a bit of an attack, do they get very kind of

It depends

…careful about you?

People are generally, I mean, people are generally really good I find. Sometimes it’s annoying, sometime people are kind of, sometimes it can feel like being crowded.

A bit too much?

But I guess that’s better than people ignoring you [laughs].

Does your asthma ever interfere with your work life at all?

No, not at all.

You just take your inhalers to work with you do you?

No. Yes, I’m office based so no it doesn’t affect working life.

Sometimes people have to have fitness test or health checks for work. Is it something that you would tell your work place about?

Yes. Yes. I always tell them. I don’t see any, you know, reason not to. I think quite a lot of people have the same thing. I think it’s reasonably well understood. Although I am a mild sufferer so I don’t know if it is for more severe sufferers but may be for sick leave and things like that. I’ve never had to take sick leave because of asthma.

But when I did eventually go back to work, it took me six months after my diagnosis to be well enough to go back to work. And then I was working very short hours and I gradually got myself up to the point where I was working about twenty-six hours a week. But I’d agreed with my GP that it would not be sensible to try and do more than that. So for about, about six months I was working that kind of pattern. And then I found out that, we all found out that we were losing our jobs. And at that point normal work really ceased, so I wasn’t really in a normal work environment.

But during that time where you were working and it was… were you experiencing breathing problems a lot, at work,? How were you feeling during that time? Were you managing it through your inhaler?

I was managing it but even I had a couple of, of, it was a learning experience. So I had a couple of insistences where I was moving from a large open plan office that was generally quite stuffy and quite hot, most of the time, you know, summer and winter. And then I’d be moving into a much cooler meeting room for example. This happened to me a few times and I would get an asthma attack even though I’d been on my normal medication regime and it, it had to happen a few times before it finally clicked that it was the change in temperature that was causing the breathing problems.

And what would you do at work when you had an asthma attack?

I always had my Ventolin inhaler with me. So, once, once I realised that it was being in a cold place that was a problem, I would just go back to somewhere that was warmer and, and just rest. My team were very understanding and very sympathetic, well most of them were [laughs].

Have you ever had to take any time off work because of asthma?

Yes, when I’ve had a chest infection, unfortunately, with the result of antibiotics it does make you retch a lot, actually it is not actually very pleasant to do in an office, in an open plan office. And it can happen at any time, and also it totally washes you out as well, so . I was honest with my boss, I said to him from the very start, I don’t go ill, but when I do go ill, it’s normally about two weeks at a time, because I suffer from asthma, and if I come down with a cold, it never stays a cold, becomes a chest infection. And thankfully he appreciated the illness, he said, That’s fine. Quite understand I appreciate that. I’ll take your word. So

And was that during your interview?

That was during the interview.

Okay and did you feel it was important to?

Yes, because I think at the end of the day, I don’t want to be misleading people at the end of day it’s going to be a factor, I can’t shy away from it. I will get ill. Its, however, regularly and well I’m taking my medication, I can’t shy away from people having colds, passing the cold to me and I goes straight to the chest. So it’s a known fact that I’m going to be ill at least once a year for at least two weeks.

And I suppose when the weather changes that’s when you?

Exactly. That’s when you notice it more as well.

And do you find you have to avoid being, if someones got a cold or do you avoid being near them or is it not

You can’t really Where I work like all last week and yesterday and Monday I was having people sneezing around me and with sore throats. I though oh boy…

Here we go.

I just took extra Vitamin C and try to do as best as I can and I thought if it’s going to happen, it’s going to happen and I’ll just have to deal with as best as I can. Thankfully, it doesn’t seem to have happened.

I don’t always know how or when it’s going to happen. Like recently I, I had a mini attack when something went down the wrong way. I was eating something and it went down the wrong hole in the throat. And it just, just something like that you don’t expect, but it had a bad effect on it, because obviously I started choking and through the choking I started coughing and it was a mini attack and I couldn’t stop coughing, I couldn’t stop, and I started to retch which is a sign of having an asthma attack.

And my colleagues were very thoughtful and generous and said, Do you want some water Well you know I couldn’t talk because as you cough you start to lose your voice. So then its, you know, and it was just the fact that people cared enough, and took the time to, that also helped as well to calm me down, because of course it’s a vicious circle. You start panicking [laughs]. Which doesn’t help either. So it’s, having people show that they care [exhales] helps you to calm down a bit. Not totally straight away, but just helps to slow down the process and as you relax and as you start to calm down then it seems to stop. It helps to, because it’s like a trigger mechanism. It’s a vicious circle. The more you panic, the more you can persistently create the coughing mechanism because of the lack of chest, I can’t explain it, but it just persists. It persists. It makes it carry on. So any form of kindness from a colleague or a friend or a family member just know, show that they care, and, you know, they want to help you, helps a lot as well.

In the past I’ve had massive problems with, not so much with colleagues but with management. And with bosses. I do recall being told in one review that I was not loyal to the company because I went to hospital appointments. Which first off that’s a very mean remark. Two, it’s an illegal remark. And it’s being a bully.

The managers who have picked on me because of my health are basically, but playground bullies. They get off on picking on the weakest.

And there have been where getting up and going to work has been the hardest thing on the planet, way harder than being ill.

It must be hard also to ring up and say you’re ill [laughs].

Yeah.

I’m not coming in.

You don’t. I’ve found, I just, I’d have to be on my knees before I didn’t go into one particular job. Which made it even more hurtful that I was told that I wasn’t loyal and I didn’t work hard. Because

Extraordinary.

even if I had time off I made that time up and did extra to compensate and they didn’t give a toss. You are seen as being a liability

and slacking. And I think actually if most decent managers open their eyes they can find that those of us who have conditions or diseases are actually much better employees because we go off, above and beyond to make sure our work is not affected by our ill health at all.

I’ve had employers who’ve just been absolutely fabulous and as a result, because you’re not stressed you’re health’s better anyway.

So that’s a vicious circle, if they get you upset

Yeah.

then your health

Yeah.

deteriorates because you’re feeling stressed.

And if that attitude, the bad attitude comes from management it’s never going to change. And all this, you know, Disability Discrimination Act, unfortunately I don’t think it means anything because if you’re poorly and if you’re having a very bad session you haven’t got the energy to take an employer to court.

No.

You know you might be right and you know the law’s on your side, you try proving it.

Don’t want to go down that road.

You don’t, you don’t want to go

No.

down that route because

No.

one, you might get labelled as a trouble maker, then other employers won’t touch you with a barge pole.

So is it something that you feel that you’ve got to kind of keep quiet about to some extent?

Yes. I think you do. I think when, you get to know people and they get to know you and you real, they realise theres nothing different about being diagnosed with an illness, and not being diagnosed with an illness, you see, if you’re the right kind of person you’re going to work hard anyway. You’re going to be a good person and you’re going to be a good employee. And once, I’ve found, once I’ve got to know people I tell them more. Now of, that’s partly because some employers will treat you badly, theres no doubt about it. Some of them do. But for those people who perhaps have never had any experience of illness they might not consciously discriminate against you but if you sit there in an interview and say, Oh, by the way, I’ve got asthma and I’ve got whatever else so I have hospital appointments and I take medication, they, just through sheer, unintended, ignorance, think,. Hmm, right, hmm.

That could interrupt the day’s work?

Yeah. Hmm, might, might not give her that job then. You know. And if it’s two people who are the same and they find out one of you has got something wrong with you, it’s highly possible you’re going to get dropped because of that.

I took the A levels and I got them. I got science, in the sciences and applied for university and I got accepted for [place] but I was too ill to go. They said try again the next year. And so I managed to get this job in a shop for where, enough to… handbags shop, this was when I was 18. But within a month I was off a week and I got sacked. Of course I don’t think that would happen so much now but

I then got this temporary job in the Civil Service at a skills centre and actually quite liked it. I was a temporary clerical assistant and applied again for [place] and again I was accepted but again was too ill to go. So in the end I just gave up that idea and applied to be a clerical officer in the Civil Service and I was called what was called permanently unestablished which meant if I had more than three weeks off in the first five years, in each year of the first five years, for my condition of asthma, then the contract would be terminated.

And I was at [place] Skills sorry I’ve done it again, but I should know as well. The staff there were brilliant and used to cover for me. I used to use my leave and use flexitime and everything. So I became permanently established.

I had a period of about 14 years where I had a really good quality of life I think. It was I went to Australia. I did all my travel, you know, travelling. I did all kinds of things and that would be from about 26, 8 to 40. I got promoted three times and I came down the [place] then in my early 40s, I just became as bad again as I was when I was 14 and that lasted for, solidly for 7 years.

And I tried my best to keep my job, you know, taking taxis to work etc. And in fairness to them they tried to give me jobs which didn’t involve travelling and in the end they said I had to medical retirement.

I had been working in the Post Office as a sort of interim job. I didn’t have good enough A levels to go to university so I had taken a job in the Post Office while I thought what I should do, and then I decided to apply for the Civil Service, because obviously with the A levels I had you could get entry into that without further qualifications. And at that time, you’re on a probationary period for two years before the Civil Service confirm the appointment as permanent, and obviously one of the things they look at is health and attendance record, and I did have quite a bit of time off and had some problems, still having asthma attacks and getting bronchitis quite a lot of the time, as a result of having an asthma attack. You’re vulnerable when you’re, you know, when you’ve got your mouth open all the time trying to breathe in or out and in fact my probationary period was extended for six months because of the health concerns. And that is quite an issue for people with asthma, the regularity of attendance at work.

Anyway, I thought my employers were very patient and in the end did confirm the appointment, and that was very good because that meant I had a permanent job and I was also in the Civil Service pension scheme, which was to have significance later on. And I think with the various sort of drug regimes and you know, monitoring by the hospital etc, I managed to keep my sick absence through asthma, or generally, down to a tolerable level for 25 years. But I have chronic severe asthma, so I have asthma all the time, just kept tamped down by the inhalers that I have. And it was very exhausting, if you are always struggling for breath, that actually has an impact on all sorts of aspects of your life. And one of the things which I only sort of saw recorded recently in asthma magazine, is this feeling of sort of tiredness and exhaustion after you’ve had asthma or, and if you have asthma all the time it’s kind of an on-going thing. So theres an impact on ones stamina.

Anyway, eventually, when I reached the age of 46, nearly 47, I realised that I couldn’t go on working because that was the only thing I could do. I would get up and go to work for the week, and I had absolutely no strength or stamina to see my family, friends, enjoy social life. And I thought, I don’t want to take the risk that my asthma inhalers will stop working, which had happened to me twice before and meant that I had to have stronger medicine to get back on to a kind of balanced sort of breathing pattern. So, I decided that I would have to give up work and I approached the Civil Service medical advisory service to see if I could get medical retirement on the grounds of my asthma. There, that was a part of the pension scheme, that you can have retirement on medical grounds. And I had a very supportive GP and we also had a very good welfare officer in my Civil Service department who both supported my case, so that the medical advisers recommended to the Civil Service pensions scheme that they should allow me to retire and put in to payment my pension. Which you’ll realise with a retirement age of sixty as it was then in the Civil Service, was thirteen years early. That obviously, has been one of the biggest impacts that asthma had on my life, that it curtailed my working life. It did mean, in terms of work, while I was at work, I had to be very cautious about undertaking travelling, for the organisation that I worked for. I felt that I couldn’t work as much I would have liked to, and I was always having to be very cautious about my health, avoiding [coughs] people with colds, trying not to have time off. A lot of the time, when I was young, I would have bronchitis and I would just go to work. I would take antibiotics. You can do that when you’re young, but it does take a toll.

What has changed is, by not going to work anymore and not being exposed to so many germs, I don’t get the chest infections I used to get, which obviously had an adverse effect on my asthma. So it’s better, living a slightly more isolated life has been better for the control of my asthma because obviously, even with the inhaled steroids, the immune system is suppressed to some extent, so you are more vulnerable to picking up viruses. And it’s not very much you can do to avoid that; simply travelling on a crowded tube , and I used to have several changes on my journey so that I was changing from warm to cold, warm to cold and, and different people, and I think it was because I got viruses that then my asthma was worse. So by having sort of been at home for I think maybe twelve years now I haven’t, I haven’t had those infections, and therefore by asthma has been better, even though I have had one or two little wobbles, I have, since the second year after I gave up work, I haven’t had to take steroid tablets for instance.

You have to accept that there are things you can’t do. I mean, yes, I still have days when I rally against it and get really cross and but I know that if I get stressed or cross with myself, I can actually make myself ill.

But yeah, I mean, it’s stopped me working and that’s the big thing, that’s the one that I hate you know. I mean, I used to work 39 hours a week, do shift work, night shifts, sleep-in, whatever, you know, I was always at work, but you know, I was at work early, I’d finish late; I loved, I like working, I like, I miss the people, I miss the interaction, I miss the responsibility.

And is that something you can foresee in the future will change or are you thinking that that’s how it’s got to be now?

I envisage working part-time somewhere, somehow. I mean, I’m not a career woman per se, but I would like some responsibility in some, you know, and to achieve something, but I’ve had to scale down what I wanted to achieve. I mean, I am currently doing an Open University degree, and I was very focused on doing a psychology degree, but now I’ve, since I’ve sort of learnt more about my asthma and the psychological impact of it, I’m actually thinking, do I want to be in other peoples heads? You know, I always want, I wanted to be a psychologist, I thought well I can do that part-time, I can work from home, you know, it would fit in with my condition. But now in hindsight, I might, hang on, I’ve got enough of my own things going on inside my head.

You’ve got to think about the impact on you.

Yeah.

Yeah.

Would I get too tired, too stressed, too anxious about other peoples problems? I mean, I know when you work as a psychologist you, you have to have your own counselling and your own, you know, you have mentors and that, but I’m just thinking, I don’t think I can I don’t think that would be healthy for me. So actually now I’m looking at thinking, well OK, well maybe you know, maybe I’ll work in an office and have just a little role, you know, some admin, you know, health admin or whatever, then just have a little role that I can do well in, rather than, I mean, my sister-in-law is mega-career-orientated, you know, works stupid hours, drives all over the country, you know, because she wants to achieve certain things in her career. Me, I think just going to work and being part of a team and, and being, having responsibility and being needed.

I mean, I’ve spent so much time needing other people that actually I’m, I quite like the idea of being needed.

And then, when she was eighteen months old she became asthmatic. She had some episodes where we were in hospital, and from then on my life wasn’t really my own. Because she would get, if she had a cold, or if the weather was really cold, she might get wheezy, and would just be able to do nothing but sit on my knee for days. And just have to go and have medicine and keep a little, but she kept getting wheezy and the doctors were getting quite cross saying, Are you giving her the puffers properly? Are you doing this? But we did have several instances. She was in hospital seven times I think in those years. And it was, I didn’t really get a full time job. I worked from home, and I kept working from home, but couldn’t go back to work because I knew that I wouldn’t be able to keep a job down, because at any minute the nightmare might begin where she would be poorly and I’d spend three days just looking after her, and not being able to think about anything else, let alone other responsibilities.

So, but I was fortunate, because I did work from home and I had a job I could do and fit around it, which was very lucky really. Otherwise I would have had no income.

She just had this, you know, recent incident. But I also think you know, she was in year six and there was all sorts of things going on. I also, oh I think I might be a bit mad, but I think that illness goes with periods in your life and emot, things that happen. And so my pneumonia I think was really a kind of a pivotal moment in my I think sometimes, I think shed got to that stage where there was a big thing coming up. She was leaving primary school and she got ill for it. And I wasn’t that surprised that she had a big thing. But I know that that’s not a conventional view of medicine [laughs] but I do think that it’s in there somewhere, in your life, you kind of, you know, you have an illness and then theres a change. And I think that’s what was happening to her. So I’m trying not to get too worried about her suddenly becoming really badly, asthmatic again. But shes, we just always have to, you know, you can’t let your guard down basically, and I had to take time off work. Oh I, basically I trained as a teacher when she was 8 or 9, after, after four years not going to hospital with her. After getting much less treatment, because it was the first time I really felt I could actually go out and get a job and work away from the home or away from her. But before that I felt I couldn’t at all. So, my, my earning power I think has probably been dictated to by her illness.

Occupational asthma is one of the clear identifiable causes of asthma which we can do something about. Probably one to 2,000 people a year in the UK have developed asthma from an exposure that happens at work. The two commonest groups of workers who suffer in this regard, are paint sprayers, so people who paint car bodies and things like that. And that’s due to the hardener in the paints. And those involved in the baking or catering industries, where they’re sensitised either to flour, or to the enzymes they use to, to make bread rise. And those are the two commonest causes worldwide of occupational asthma. However there are probably over 300 different causes of occupational asthma. Some of them relatively esoteric, some of them relatively common. Chemicals, apart from the paint hardeners. Organic molecules such as for instance people who work in fish processing or prawn processing characteristically develop occupational asthma.

If you develop occupational asthma, this is a compensatible disease. You can get compensation from the government, and, but the most important thing is to try and remove the individual from the cause. Now that’s easier said than done. If you’re a baker, you can’t really, for instance, say, you have to change your job and become a, you can, but that’s a big decision to make.

Another approach, of course, is to say well can we find something else that would do instead of the agent that causes the problem. For instance, there was, there is a cause of occupational asthma, due to something that’s found in the flux in solder. So solderers get it. And they found, and once you found, once we had established what it was in that solder flux, it could be removed. The flux still worked and so you were able to remove that opportunity for individuals to get occupational asthma. But if you’re a baker you can’t remove flour. It just isn’t an option, you know, then no job.

So, then you’re into the possibilities of using what’s called respiratory protective equipment or RPE, which is a mask, to try and reduce your inhaled, your inhaled exposures. Some people find that perfectly acceptable. Others find it almost impossible in the context of their job. And very often people with occupational asthma have to change their job. Which is a major upheaval.

So in general occupational is a well recognised, but not as well as it should be, cause of asthma. And if anybody who develops asthma during working years for the first time, one in ten of those individuals it will be due to their work.

I can actually not am not affected by what is a standard, its more chemicals, because mine is more occupational health. I put it down to the fact, I was working for a local authority in East London and they wanted me to triage and sort out a huge amount of children’s files, which are children that had been adopted or whatever, fostered. And these under the Children’s Act had to be stored for at least 75 years, and these were stored in the worst place possible, dark, dank places. And there was actually orange mould growing on the files. And I asked for protection. I thought you know, and, but nothing was given until the end of the two month period, and I think by then the damage was done. And I mean I did a good job, I did everything. But that was the year in December 1997 when I had this persistent cough and the work I did was during sort of like February to whatever, September. So it was not sort of straight afterwards. But then I got the cold and then it was persistent cough and at the time I just had to sort it out and that was when I was diagnosed.

And people said, Oh well why didn’t you sort of go back and sort of take out a case? And I said, Well at the time I was just too shocked, I wasn’t expecting to have that. And by the time I did think about possibly taking the local authority to case because they didn’t actually provide me protection it was too much of a hassle. And I may still be able to do it, but lifes too short to have to worry about these things. But at the end of the day I wouldn’t want anyone else to be suffering in that respect because it just doesn’t seem fair. You know, you have a job to do, naturally you want to do it to the best of your ability but you need to be able to be protected also, to enable you to do it to the best of your ability.

And that was the frustration. So I have what is called occupational health asthma, because I’m not affected by the standard triggers, like dust or fur. I’m more affected by chemicals.