What is severe asthma?

Asthma is a common lung disease that affects around 10% of Australians and approximately 3% of those with asthma have severe asthma. Severe asthma means asthma symptoms and attacks continue despite treatment, or high doses of inhaled steroids and long acting reliever medications are needed to gain control, and the health care provider has considered other factors such the person’s self-management skills, triggers and co-existing illnesses [Reference: Severe Asthma Toolkit]

When asked what severe asthma meant to them and what impact it had on their lives, people we interviewed spoke about how the disease is recognised, the process of coming to terms with it, their physical experience of an attack, and the need for regular medication. People with severe asthma noted that their healthcare providers used a variety of terms to describe their asthma such as unstable, chronic, non-allergic, atypical, and brittle, in addition to the word severe. It was important for Jemma that severe asthma was referred to as such otherwise people were too dismissive and saw all people with asthma having the same journey. See also Getting Diagnosed.

Leanne’s asthma was difficult to treat.

Wayne finds the reality different to what he’d imagined.

Severe asthma was not something Jemma expected.

Some people we interviewed described severe asthma in terms of symptoms and signs, such as not being able to breathe properly every day, having regular attacks, congestion, and constant cough. Others spoke of the long-term nature of the condition, using terms such as chronic. For some patients chronic signified severe. Some people with severe asthma described their condition in terms of the treatment required, such as needing “daily maintenance”; “treatment I am dependent on”; when “puffs of reliever simply won’t cut it” and “you need the machine”.

Marg has her own way of thinking about severe asthma.

Marion spoke in terms of the dose of steroids needed.

Helen didn’t see anything different when told she had severe asthma.

People we talked to described the impact of severe asthma on their lives either as what needed to be done, or what they were prevented from doing. Those that focussed on actions required talked about exercising more care in looking after yourself; taking things seriously in consultations with healthcare providers, not just showing up; being constantly vigilant, and finding different ways to do things. There was a positivity and acceptance among those people, and some saw their condition as an opportunity to think what’s important in life. See Coping strategies.

Justin has accepted that asthma is a part of who he is.

By contrast, some people with severe asthma noted first and foremost what severe asthma did to them — not allowing independence, having to watch others enjoying activities, and being frightened to try things in case something went wrong.  They also described how severe asthma affects how they go about things—needing to be careful and not being able to perform at what your usual level would be like. Some men in the study expressed frustration with not being able to perform expected physical roles. The irregular and unpredictable nature of severe asthma also affected people’s ability to maintain routines.

Shannon feels she is always preparing, not living in the moment.

Karen feels unrecognisable compared to her previous self.

Some people described severe asthma by the actual physical experience, like putting your head underwater, breathing through cotton wool, tightness in the shoulder blades and a build-up of pressure.

Gaye didn’t realise her own breathing was so noisy.

Karen literally had to hang on to furniture to breathe.