People in this study felt a lot of misunderstanding around severe asthma, particularly the idea that all asthma is similar, and can be easily treated just by using puffers. The public perception is that asthma is a disease of childhood, and so people tend to dismiss it in adults. There was also frustration that the general public, and even other people with asthma, don’t understand how debilitating severe asthma can be. This is not helped by public health messages which suggest that asthma is controllable with the right therapy- this may be so for mild or moderate asthma, but unfortunately not always for severe asthma.
Leanne is frustrated that people don’t understand the difference.
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Everyone says the same thing, ‘well what’s the difference?’ There’s a big difference, you know. And then you try and sit there and explain it to them, they just don’t get it. You can sit there until you’re blue in the face and unless you actually smack them with it they don’t get it. At all. They just think oh you get a bit puffy, you take some puffers, you’ll be fine.
Joel wants people to understand there is a range of asthma presentations.
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I feel like the general understanding is people just want to throw asthma and severe asthma in the one basket and call it asthma like, but they don’t understand there’s a broad range between someone who’s got mild asthma and someone who can go from breathing to like that, to hospitalisation. Like there’s a massive gap there guys and what you need to understand is it’s not just because yes, something’s triggered it, but it’s not because of that. The person with severe asthma is no different… should be treated no different to the person with mild asthma or whatever they want to call that. My goal is to try and make sure the person with asthma gets treated no different to someone who’s got a bloody cold.
Jemma finds even other people with asthma don’t get it.
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One of my friends has a child with asthma and I said, ‘does she use a spacer?’ Oh no, she doesn’t. I just told her no, so she doesn’t breathe when she has her puffer. And I’m thinking OK. And she’s an asthmatic but she sort of doesn’t… she knows that I’m very sick and is very supportive but she has asthma and doesn’t understand that her asthma is not severe, it’s just mild. And sometimes can’t understand why I get so sick. It’s not that she doesn’t believe that I’m so sick, it’s just that she doesn’t understand getting that sick with asthma because hers is so easily fixed.
People we talked to found it irritating that even when they explained their circumstances there was still little empathy or understanding. They found most people don’t want to know, and dismiss the predicament of the person with severe asthma with a knowing nod, when in fact they don’t know.
Margie spoke about people listening but not hearing.
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I think nobody really wants to hear when you’re sick, and you know I try not talk about what I’ve got, because most people aren’t really interested, you know. And these people, you ask them how they are, and well, you know, you’re still there half an hour later, finding out how they are. Not interested. Nobody wants to know, quite frankly. “How are you?” “Very well, thanks.” Unless you’re rattling and they can hear you, they wouldn’t know.
Allen feels that unless someone has lived experience they don’t know and don’t want to.
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Unless it jumps up and bites them on the bum I don’t think they know much about it at all. And a lot of people don’t want to know. Unless it affects the actual individual I don’t think they really, you know, probably got enough on their plate. Yeah. So it’s greatly misunderstood.
Sometimes comments from other people were hurtful and could make people with severe asthma feel worse, even like a hypochondriac. Healthcare providers didn’t always appear to believe their patients’ reported asthma severity, and some made the person with severe asthma feel to blame for their illness. A big issue for participants was dealing with what people think they should be able to do, not the reality of the situation.
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She just turns and says, “I’ve had asthma before,” and I was like, I just think to myself, “Lady, I’m very sorry but every asthma is different, and not all asthma is the same and it’s not like it was ten years ago, twenty years ago, it’s so different these days, there’s so many different things,” but they know. So like I said, you just feel like you’re that book, that you’re crying wolf all the time until that person decides they want to listen to you at the moment.
Marg doesn’t think the doctor believes her about the severity of her illness.
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It’s almost like if I go to the hospital or I go to the doctors and it’s not as bad as what I think it is or what it could be. It’s almost like I’ve been caught out exaggerating it, yeah. So I don’t have a good, a good experience with doctors for that reason. A lot of it is because I’ve got that belief coming in that they’re not going to believe me.
Joel wonders why people think somehow the person with asthma is at fault.
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My biggest concerns are that people with asthma get treated like, I’m trying to get rid of the stigma that people with asthma, when they have an attack, like they do it on purpose, which is what people without asthma actually think. It’s like “oh, you did this on purpose!” “No, it just happened”. Don’t…
I feel like my biggest goal is to try and get people… try and get rid of the stigma that’s attached to asthma and try and almost educate the public to say “hey, just ‘cause someone’s got asthma, doesn’t mean… they’re not an ex criminal that haven’t been caught yet”
People with asthma may look fine from the outside which makes asthma largely invisible and can lead to difficult social situations. For some people in the study severe asthma as an ‘invisible disability’ meant they felt guilty or had to justify their actions as to why they might not be doing their share or be in need of special privileges such as parking. Other people felt quite conflicted about being labelled as ‘disabled’.
Frank feels people with asthma don’t get the same empathy as others with more obvious physical issues.
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I think the people don’t, because people still see me standing and breathing and walking there’s, well that’s a condition he’s got but he can live with it. Unlike a person who’s arthritic and their hands are bent or something. There’s a lot of outpouring for that type of person. But a person with asthma, a person is always seen to be full of life for example or a person who’s always socially active they don’t see that. They don’t know the pain, because they can’t feel the pain you feel when you have a bad attack of asthma.
Ian believes others see him as not pulling his weight.
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And then when, not everybody knows… you don’t have a sign around your neck that says, I’ve got bad asthma. And like, why is this bloke standing around not doing everything, and all the sheila’s are dragging the balloon up. It’s like, well listen mate, I’m not up for that. I’m not lazy, I’m just not capable.
Shannon feels torn about the whole disability issue.
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We may have asthma but we’re not disabled. But we are, because it stops us from doing a hell of a lot of stuff… IT puts you in that category that you’re disabled. Yeah, I would love to be able to park in the disabled spot, to be only having to walk from here to there, instead of walking a mile and getting into the shopping.
Participants dealt with the stigma they experienced in different ways. Many felt embarrassed as a child or young adult as they did not want to be seen as different; most had now gotten over that. Some people advocated more education on asthma generally, some chose not to mention having asthma, and some took a more fatalistic view, as having asthma is all they have ever known.
Tony kept asthma to himself as a child.
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But I never told anyone else I had asthma, you know, the adult friends anyway. I was just a normal kid like them. I’m no different, I don’t want to be any different to anyone else. You really don’t want to be different, you want to be normal, you know.
Ian didn’t feel it affected him on the dating scene.
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I don’t think that when I was a young fella that I even had any girlfriends who said, I don’t like you, you’ve got asthma. You know, it’s not… no, it’s never been a bit of a road block, or a disability as such… or got in the road of any relationships. Not as far as I know.
Logan wishes people would not stare.
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But yeah, it is-like when you’re in public it is frustrating, people stare at you, you know. I don’t know. It’s not the end of the world but yeah, it’s not- you haven’t done anything wrong so. It’s no different when I had the naso-tube and you know every single person would just stare at me so, yeah.
Marg didn’t want to be seen as different or be made a fuss over.
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It’s not wanting to be made a fuss over or making a dill of yourself. I’ve had those turns in a couple of towns, and had to sit down in the gutter with my head in my hands to get my breath and felt like I was a flea, really embarrassed about it. And so… but that’s… and I think it goes back to when I was a kid, I didn’t like being picked up in the gutter or after I fell of that bike or at school getting asthma and having to go to the doctors, it was embarrassing. Yeah… different. Yeah, not… not normal.
Although inhaled medicines are an important part of asthma treatment, studies have shown that many patients find having an inhaler ‘embarrassing’ or ‘a nuisance’. Some participants in this study tried to hide their puffer use from those around them, but others thought that no one really notices medication use.
Michael doesn’t worry about using inhalers in public any more.
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Initially I was really a bit embarrassed everyone’s going to stare at me. It’s a bit like diabetics. After a while, you don’t even notice someone injecting themselves and the same with puffers, people don’t really notice you’re using it, so don’t be embarrassed or worry about it and people don’t stare at you with a funny “oh, what’s wrong with them?” People just accept it, if they indeed notice it.
