People we interviewed appreciated the support provided by those close to them—not just emotional support but also assistance with activities of daily living, and knowledge of their action plan when a flare up occurs. They also spoke about how having severe asthma affected interactions with their family, spouse or partner, and friends.
Relationships with family varied between people with severe asthma. Some people were quite open with their siblings and parents, whilst others didn’t want to burden their extended families as “everyone has their own health problems”.
Joel finds the level of support fluctuates.
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It varies like, the support I get from family with asthma, it varies and fluctuates. It’s like “yeah, we know you’ve got asthma. Why have you done this? Why have you done that?” I say “look, you can’t judge someone because they’ve got asthma. They’re not going to remember everything. Humans aren’t perfect”.
For participants who had asthma from childhood the support of parents was crucial, and several recalled the emotional support provided particularly by their mothers. Siblings, by contrast, did not really understand and were not happy that the child with asthma got more of the parents’ attention. Often having a child with asthma completely changed family dynamics.
Justin’s father sold the farm that was expected to be passed down through the generations.
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Well, I guess the earliest things were I couldn’t do what my brother was doing and my cousins were doing and I think that changed my relationship with my parents too probably because I was the first born of a first born on a farm and I was never going to be the farming son that my dad wanted. No criticism to him, that’s just how it was. And I just couldn’t do the stuff that the rest of my family were doing, I probably would have affected them too, but I was too young to realize. And I remember we were going down to the Royal Adelaide Show once and we stopped overnight at Stirling Caravan Park, and I had a massive asthma attack and I got to the children’s hospital, and so my brother didn’t get to go to the show. And all I thought was he should have gone and bought me a show bag. So yeah, it would much have affected our whole family. I mean, Dad sold the farm when I was 12 because he had asthma and I had asthma, so there’s no chance of us, you know, I should have been a fourth-generation farmer. So it changed our whole family.
Selina was actually separated from her parents and siblings during her early years.
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I couldn’t live with my family because where we lived was making me sick. So, I went and lived with my grandmother. Because, and what people don’t always understand is that, you know, you move somewhere, and you get a job and you buy a house and you have children and one of them starts to become ill. And it’s huge decisions to make as to what to do. So, and I lived half an hour away from them, so we kinda grew up separately. but they spent time with me, but generally not when I was in hospital.
Severe asthma affected some participants’ roles as parents and grandparents. Having a life-threating condition as a parent with severe asthma means that grown-up children may have to step in or put their lives on hold to assist. For those participants with younger children, the effect on the child’s mental health from having a parent constantly struggling to breathe right in front of them was of concern. Commonly the person with severe asthma felt guilty, or a sense of failure, when unable to assist family members or participate in important family events such as weddings due to their illness.
Karen’s son gave up an overseas scholarship to come home and support her.
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And now I haven’t worked at all for two and a half years, and so this has been the biggest adjustment ever. I mean my son was in the States, he came home, he was on a scholarship playing soccer and doing a degree over there. He was at that transition point where he had to change college, but he just went no I’ll come home. So he’s taken on so much housework and helping out with his brother, and my husband’s had to take, you know, on a lot of the things I used to do. Also everybody sort of sleeps, someone gets disturbed because I’m up so much. It changes everything for everybody.
Shannon is worried about the effect on her son.
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To say to my son, well, you know, when Mummy’s in dire straights, how do you feel? Because then he would have explained to you that, oh my God, he used to walk around all scared. I hated it myself because like I said, I always worried that he was worried that I wasn’t going to be here anymore. He was in tears more than I was because all I was trying to be—having my asthma attack, trying to be strong for him. You know, just say, “Well, you know, I’m going to be fine, it’s okay.” Even though inside my head I’m thinking, “Oh my God, am I or am I not?” Because that’s how I felt too, because that’s how scary it was. It was just, yeah, horrible. And then like I said, I am now stressed with it every day.
Marg’s family don’t want her in the house when someone is sick so she can’t help out.
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They don’t want me in the house when anyone’s sick and that’s… that probably is the hardest thing for me to deal with, is that it… it labels me… it doesn’t label but I feel as though I’m neglecting them and I know I’m not and that, but I… I feel a bit bullied by my youngest daughter because she won’t have me there, because I feel I should be there. That would be the biggest impact with family is that.
Regarding the relationship with a spouse or partner, people in this study talked about the loss of intimate relations, their partner becoming their carer and the strains on their relationship. They mentioned learning through experience what needs to be done to adapt to the situation. Despite this, the person with severe asthma sometimes felt that their partner wasn’t really able to grasp exactly how bad the situation was at times. Some people took the decision to remain single so as not to burden others with their illness.
Kim has lost interest in sex.
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I can’t do anything, I can’t kiss, I can’t breathe and I’m not interested anymore, I’m too bloody crook. I’d rather go fishing, I seriously would. I don’t actually mind dying alone and I won’t be alone. [My carer is] my best mate in the whole world and that’s enough.
I think probably now he’d like a relationship again after everything we’ve sort of been through together but it’s not possible, I couldn’t, I couldn’t keep up with all that was required of it and that’s sex, it’s the whole lot hey. I couldn’t think of anything worse, to be honest. I couldn’t think of kissing anyone as anything worse. I like what’s coming in my mouth is air, to do that would block it so, yeah, no.
Marg says that her partner and friends don’t always understand.
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I knew it was serious because the doctor called my husband in and said, you know, ‘this is serious’ because my husband he has never had asthma, he’s not a man who gets sick and he doesn’t understand… he didn’t, I don’t think until the doctor said ‘this is… this is life… life threatening’ and, although he grew up with a brother who was asthmatic and… and… it’s just he hasn’t got it. And a lot of people don’t, a lot of my dear friends, I love them dearly have got no idea they just think I’m overreacting but I know how serious it is and I don’t want to put myself in that, I don’t.
Making and retaining friendships proved tricky for people with severe asthma. People we talked to felt socially isolated through having to avoid places where they may catch an infection, or where there are strong scents. They also had to ask sick people not to visit them, which was at times seen as being rude or fussy. Sometimes they were simply not well enough to go out. This led to a variety of emotions for people with severe asthma such as a lack of self-confidence and feeling left out, but at the same time not wanting pity or special treatment.
Diana has had to avoid people who smoke, and this has led to not participating much.
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Well, I think the main example for me in my later life is that I don’t, I don’t like large crowds of people, because somebody could be wearing perfume. Or smoking heaps. So I avoid, I always avoid people like that. And I also avoid people who smoke a lot, because I just can’t be with them. So rather than get to know them, and they think I’m rude because I’m not attending anymore, I just don’t participate. So yeah, I think there’s a pretty big one too. Because people know that I have asthma, but they don’t really know that I’ve got asthma, you know
I: What about social life?
Well that’s the big one. That is the one that I’m talking about, because you can’t participate in much, because you can’t follow up. Maybe next week or the week after or whatever, you know?
Kim doesn’t want pity or special treatment from her friends and tends not to go out.
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As I said before I can’t go out for tea, it might be too hot, it might be too cold. I can’t just go out with the boys, I can’t keep up and I’m not going to ask them to bloody wheel me in somewhere or something. But if I said I was going to go out with them, for example, and they picked a place that had three stairs, how am I going to do that and how am I going to hide that I can’t do that? So that’s become nil.
People with severe asthma made friends wherever they could. Some found they lost friends because of their asthma, which was disappointing. Lauren would like to think people would have respect for other people trying to manage their health. Not everyone found themself in this position—some people we interviewed felt they found out who their friends really were following their severe asthma diagnosis, and these friends were a godsend. It was even better if the friend also had severe asthma.
Justin has kept his friends from work after leaving.
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I’ve got a very good circle of friends but that circle of friends hasn’t changed since I left work, but hasn’t increased since I left work. I can’t go and do sporting activities and make new friends and I don’t need to make new friends, but I think that I would never move from here because I would have trouble making new friends because of the asthma. You can’t join a sporting club, and I can’t work so it’s-it puts the brakes on.
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Eventually because I didn’t smoke anymore, I was nothing. Yeah, pretty much. My-my best friend, she just literally didn’t want anything to do with me and I just think to myself like, ” Oh my God.” Like everything, I went through with her. Like she lost a baby and I help her put her in the ground and all that kind of stuff and stood up and talked, did everything for her. And then as soon as I got my asthma, I was a nothing. You just don’t have friends anymore in this town anyway. This town’s very small and once something happens, you-you’re just outcasted, so. For a good probably two years. When I went into hospital and expected people to come and see me in hospital and no one come. It hurt. Yeah. So, I was sort of just been battling it by myself. Yeah.
Frank’s friends tend to forget that he has asthma and he doesn’t remind them.
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Any of my friends really, I don’t know if they’re. They tend to forget that I have asthma or they, they know I’ve got it and then they forget it and then they remember then they forget it. So it’s not at the forefront of their mind that I’m an asthmatic and I don’t raise the issue with them.
Jemma was embarrassed but delighted to be able to call on friends in time of financial need.
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When I first got really, really sick, financially it was a disaster. We couldn’t afford. I mean when you go to a specialist and it’s $500 a pop and you’re on a pension, that’s like where does the money come from? And two of my friends gave me. Like one of my friends gave me $3,000 and the other gave me $1,500, and I didn’t ask for any money. In fact, I was totally embarrassed by it. They said, ‘oh no, it’s there for you’. And I was like, you know I couldn’t believe it. But their response was so different to my family that I actually was blown out by the whole thing.
Lauren found having a friend with severe asthma very helpful.
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It’s nice to have a friend that actually has that condition as well. And, you know, and then, like, we have different things, so like hers maybe is not as bad as mine, but she’s got incredibly bad eczema, like, all over her body. Yeah, my eczema will flare up from time to time, but, like, sort of, not like that. So, then I think like, I mean, I would hope that she, sort of, knows that, like, I understand that, so that yeah, that is actually really nice.
