Disruption

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.

Jemma is sad to lose her independence.

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

Leanne couldn’t pursue her chosen profession

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.

Wayne’s employer has been accommodating.

Selina hasn’t discussed her asthma with workmates.

Helen fears being perceived as lazy by others at work she has had to take unpaid leave.

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.

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.

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