Theme 3: “Alone with asthma”

Being misunderstood
 Confusing severe asthma with fixable milder asthma“You have all these ads on telly with wonderful Australian cricketers that play world class cricket, and they take their puffer. ‘We have asthma but we can do anything' … [People think] ‘So why can't you do that?'.” (Pamela, female, 60years)
 Resentful partners“He's resentful of it. Sometimes I wonder if he really thinks I'm that sick at all, and I know he doesn't understand.” (Stephanie, female, 38years)
 Emotional distress“I have struggled with [depression] personally when I have been so, so sick, and I probably struggle with it every day now that I live alone. It's harder ((becomes emotional)).” (Rhonda, female, 54years)
 General public education to  address misconceptions“I think it needs a bit more publicity. Because when you say to people ‘I've got severe asthma’ I think 90% of the population goes ‘Oh yeah, asthma. Every second person has that.’ I don't think there's a comprehension there. And you don't want it as a sob story, but there needs to be that acknowledgement that people with severe asthma are [not mild] asthmatics.” (Stephanie, female, 38years)
Stigma and disclosure
 Insensitive comments“I went to a musical with a friend … she turned to me and said ‘How on earth did you hear any of that? You were wheezing louder than the choir’ … I felt ‘Gee, well, where do I fit in? Where is my place? Where am I supposed to be?’.” (Rhonda, female, 54years)
 Concealing asthma“I don't want to be specialised at all in their eyes, or treated in any different way because I've got asthma.” (Steven, male, 71years)
Disrupted identity or self-concept
 Dissociative thoughts“[Asthma] isolates you because inside there's an emptiness or a difficulty with trying to balance with who you really are and what you need to be … It's like trying to avoid yourself while maintaining some sense of self.” (Rhonda, female, 54years)
Alone with exacerbations
 Panic, fear and anticipation of  death“Suffocation. Can't breathe. Dying. No other way to put it … Trying to control my breathing, panicking at the same time because I can't breathe and [thinking] am I going to see the night through?” (Neil, male, 60years)
 Use of cognitive breathing/  relaxation strategies“Even if I have to lay on the bed and just settle, relax, try and breathe, and get it out of my head that it's my last breath because that's what panics you.” (Joan, female, 52years)
 Habituation/poor perception of  symptoms“I can cope quite well with very little output if you know what I mean. So you adjust to that level. And you don't really realise how bad [your asthma] is until someone points it out to you.” (Stephanie, female, 38years)
 Family member's trauma“I think it has changed the way [my son] has turned out because he's sort of a bit of an anxious character now because he saw some terrible things happening to me and he panicked and thought you know, ‘I'm going to lose my mum’.” (Jacinta, female, 63years)