When asked about the effect of severe asthma on their lives, people we talked to often mentioned the reduction in physical activity. This affected their ability to be independent, undertake enjoyable activities or in some cases even daily activities such as housework, and also their social life. See also Emotional Burden; Other people’s understanding of the severe asthma experience; and Relationships. Another more hidden aspect that some people we interviewed mentioned was the negative effect of asthma on getting a decent night’s sleep. Other common talking points were interruption to paid work and schooling, and also the effect on the choice of where someone lived. For some people we interviewed severe asthma was all consuming.
Justin feels severe asthma has affected every single part of his life.
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Well, it’s impacted every part of my life. The family left the farm because of asthma. I left home for six months as an 11-year-old because of asthma. I lost my job because of asthma. I stopped doing things that I liked doing because of asthma. So, there’s not one area where it hasn’t stuck its beak in…
I was in a coma for eight days. I was dead, I died. So it’s before the coma and after the coma pretty much, so yes, it changed everything. I had to go live with my parents. I had two houses at the time. I lost one because I didn’t have the income, I barely kept this one, I had to rent it out. I was broke and it was awful. So, yes, it changed everything.
Jemma is sad to lose her independence.
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I’d love to just go out by myself on my scooter and be able to do things by myself. Although my partner… it’s just that I would like to be able to be free to do my own thing. I’d like to be able to play my clarinet again, which I can’t. And that really upsets me. I started an orchestra at the last school I was at and I have contact with a lot of the kids that were in the orchestra and the people that ran the orchestra and some of the parents and they have a band at the conservatorium down here that I could be part of, but I can’t play, I don’t have the breath to do it anymore um so that upsets me. Things like that you can’t do. I’d love to do… they’ve just been to Fremantle to play in the… it’s like an outside show, it’s called Honk! and it’s in the park. And those sort of things I can’t do. I’m a good cook and I can’t stand up and do the cooking for long. I get exhausted and that sort of follows on with my breathing and I can’t shower myself normally. Things like that, having a shower and getting dressed and having to be helped, I find that really, I don’t know, demoralising. It’s just I’d like to be independent. When I start breathing heavy and I can’t like get my breath, I find that really… yeah, I hate it. Yea that’s the reality. I just hate being beholding to somebody else. Can’t do the dusting, can’t do the vacuuming. I do some ironing sometimes but that sometimes sets me off. So there’s all these things that I can’t do.
In respect of paid work, severe asthma affected the career choices of people we interviewed—there were reduced options available, and those opportunities did not necessarily reflect the previous study that had been undertaken. People we interviewed spoke of opting for less active, less stressful, and part-time jobs. In order to avert an attack some people in the study avoided jobs that required travel to people’s houses. Occasionally they had to stop work altogether.
Monique was unable to realise all she studied for at university.
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I never thought this would be my future. I was at high school, I did my HSC, I went to uni, my future was earning lots of money, living in a great place, having kids. All those things that you dream of. And I look back and I go, wow, I basically worked for five years. I’m 39, and that’s all I’ve done. I have a degree, and all I’ve managed to do is work for five years, and most of that was temp work. Not most of that was temp work, no that’s wrong. There was like four years straight of working with mining. That wasn’t in the future, my life wasn’t… what happened? How did it end up that that’s all I worked? And that was in my twenties. I’ve not worked in my thirties. That’s crazy. This should be the time when I’m buying… I should have bought a house. And instead I’ve got nothing, and I’ve got nothing to go forth to a job with. You can’t sit there and go, well, 12 years ago I was a commercial manager, so give me a commercial manager job and pay me lots. They’ll sit there and go, no, you can be a receptionist. So you lose it all, you lose everything that you worked so hard for.
Leanne couldn’t pursue her chosen profession.
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Everything. Because what I wanted to do, I can’t go near rotting vegetation, damp soils or anything like that. So kitchen work was out, friends at work was out. I’m kind of stuck now. They thought about putting me in office work and my doctor told them no because if someone walks in with cheap perfume she’s going to be screwed. Yeah well put me in a bubble, put me in a laboratory somewhere and I can relate. Got that one figured. Is there anything else I can do?
So were you able to finish your degree?
No. Unfortunately. Is anything else I can do? You can become a police officer but you’re too short. I’m not going to become a lawyer, fuck that. That’s what dad wanted me to do. It’s not happening. I had my heart set on being C.N.E. so that ain’t ever going to happen. So no, unfortunately.
Reduction in physical abilities affected people’s capacity to work. Tony mentioned the difficulty of just talking in a work context when you are short of breath. On a few occasions lower mental ability was mentioned, with some people we interviewed saying they needed to push hard as their brain was foggy and they had reduced energy. Some people in the study told their workmates about their asthma and found them to be supportive, however on a few occasions the person with severe asthma made an excuse such as saying they had a bug, or hoped they would not have an attack on the job. Not all employers were accommodating; for example, one person we talked to was not allowed to use a nebuliser at work. Some people ignored their asthma and went to work out of financial necessity, risking their own health. Other common themes were not taking as much sick leave as they should have, working harder to make up for the times they could not work, and the uncertainty that goes with having a chronic illness and trying to hold down a job.
Justin knows it’s hard to be relied upon when a lot of sick leave is taken.
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Yes, I ran out of sick leave from my last job. First job, not so much. I was a bit better, but then once in my 30s and everything was going downhill, I took lots of sick leave. I really would have been an awful employee because you can’t…you have to be relied upon and I couldn’t be. I was good at what I did, but it wasn’t good enough really. You feel like they’re going “not again” or “how sick is he?” You doubt, you doubt them, which is awful. You shouldn’t doubt other people, but you doubt yourself as well. So, you feel like you’re letting everyone down.
Wayne’s employer has been accommodating.
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But work’s been good. They, they’ve given me a little office where I can go, log onto a computer at another depot and sort of like have 40 winks and then recuperate and go back out. Because well the managers at work, they know that I’d never had any symptoms or anything up until that day, I was perfect up until that day.
Selina hasn’t discussed her asthma with workmates.
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Quite a few years ago they brought in that you couldn’t ask someone if they’ve been on WorkCover, okay? So now I get around that by saying is there anything that will stop you from performing duties that you be asked to perform? And I write no all the time because there’s, there’s not. I can do my duties. You know, if I happen to be unlucky enough to have an asthma attack while I’m working there, so be it. But I’m never going to tell that to anyone. You get judged enough on things, you know, not having to add those things to it.
Helen fears being perceived as lazy by others at work she has had to take unpaid leave.
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I was very self-conscious, very nervous about going back to work, about those in the back with dagger looks. She can’t say that something’s wrong with the person. I hadn’t come back limping or with splinter or stitch or whatever. I was very self-conscious and anxious about it. 10 days annual leave a year, it was never enough. It was never enough. I was always ending up on leave without pay or having to use my annual leave because I can’t afford to not get paid. That was very stressful. The senior staff who doubt me, things like that. It doesn’t matter if you’ve got a medical. Or didn’t; I don’t know about now, but it didn’t matter if you have a medical certificate.
I can remember being seen in a supermarket, I can remember the actual supermarket, it’s not around anymore and how I felt that day now, I don’t know who saw me, could have been a customer or whatever. Obviously, someone said, “I saw her in such and such shop.” I could still remember how terrible I felt, but I had to get some things. I had to get some things so that I can look after myself. “If you’re well enough to do that, you should be at work.” That was a constant- not that I was always going to shops every time I wasn’t at work but that really created a lot of paranoia for me.
People with severe asthma were seen by some employers as a bit of a risk, and several people we interviewed were eventually declared medically unfit to work. This was difficult for people with severe asthma to process, as work was seen as part of a person’s makeup and also provides structure.
Justin found himself unable to work in his 30s.
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Stopped working completely. I tried, tried graduating and return to work for about five years. I was doing part-time. I got pneumonia three more times in that period and lots of other little things and it just got harder and harder to work and because I was in a customer-focused business I just kept getting sick. And so that was really hard because I never thought that I was an asthmatic. I mean, thought that I am asthma, but I always thought I’m what I do, and so when suddenly I didn’t have something I was doing, I was only left for the asthma and that was a bit yukky.
Another life disruption people we interviewed talked about was missing school. Sometimes they were able to make it up, but some people with severe asthma had to repeat school years. That being said, missing school wasn’t always seen as a negative.
Rachel missed school but says it made her stronger.
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It was probably as about a 10 year old because in that year, I was in grade five and I lost half a year of studies from grade five, six and seven. I’ve got my little red record books and yeah. So, but it could have been that’s all I can remember that far back. But we always lived on the farm and a lot of things irritated me. A lot of horses for one thing and yet, we love the horses. We used to get on the horses but then, you know, mama tripped me down and got all the fur and that off me and, yeah, yeah. Just silly little things like that but that’s, that’s one thing. I do remember I did miss so much of schooling. Yeah. So, made me stronger. Made me stronger.
People with severe asthma may be restricted in their choice of living situation due to the effect of their asthma triggers. Some people we interviewed were moved from their immediate family as children, whilst others made decisions on housing as adults based on the local climate including factors such as humidity, winds and air and soil quality. See Triggers.
Michael had a bit of trial and error as to the best place to live to keep his asthma controlled.
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So, that’s probably how I dealt with asthma for many years. Put up with a lot of response to triggers, but living in the city, it just became worse and worse and some 20 odd years ago ,15 years ago, I realised it was the cold and the dry cold was better for me, which is unusual, because most people tend to find being near the Coast or um hot weather better. I did live near the coast for a while to try that, because my father always lived by the coast in South Australia. The dry air was good for him, the sea air was good for him. It wasn’t for me, so 15 or 20 years ago I moved to the mountains. The issue was of course, when you’re allergic to a lot of things, like grass seeds and dust and you move to the country and the mountains are on the edge of the country, then there’s going to be other issues that will be triggers for you. So again it’s about getting the balance right, finding the right environment for you, knowing what the triggers are and acting on them if you need to, but as I said, I did try living by the coast for a while, thinking sea breezes would be good. Didn’t help. The heat and humidity were just bad triggers for me.