Other peoples’ understanding of the severe asthma experience

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.

Joel wants people to understand there is a range of asthma presentations.

Jemma finds even other people with asthma don’t get it.

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.

Allen feels that unless someone has lived experience they don’t know and don’t want to.

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.

Shannon feels she’s crying wolf.

Marg doesn’t think the doctor believes her about the severity of her illness.

Joel wonders why people think somehow the person with asthma is at fault.

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.

Ian believes others see him as not pulling his weight.

Shannon feels torn about the whole disability issue.

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.

Ian didn’t feel it affected him on the dating scene.

Logan wishes people would not stare.

Marg didn’t want to be seen as different or be made a fuss over.

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.