People we interviewed appreciated the support provided by those close to them—not just emotional support but also assistance with activities of daily living, and knowledge of their action plan when a flare up occurs. They also spoke about how having severe asthma affected interactions with their family, spouse or partner, and friends.

Relationships with family varied between people with severe asthma. Some people were quite open with their siblings and parents, whilst others didn’t want to burden their extended families as “everyone has their own health problems”.

Joel finds the level of support fluctuates.

For participants who had asthma from childhood the support of parents was crucial, and several recalled the emotional support provided particularly by their mothers. Siblings, by contrast, did not really understand and were not happy that the child with asthma got more of the parents’ attention. Often having a child with asthma completely changed family dynamics.

Justin’s father sold the farm that was expected to be passed down through the generations.

Selina was actually separated from her parents and siblings during her early years.

Severe asthma affected some participants’ roles as parents and grandparents. Having a life-threating condition as a parent with severe asthma means that grown-up children may have to step in or put their lives on hold to assist. For those participants with younger children, the effect on the child’s mental health from having a parent constantly struggling to breathe right in front of them was of concern. Commonly the person with severe asthma felt guilty, or a sense of failure, when unable to assist family members or participate in important family events such as weddings due to their illness.

Karen’s son gave up an overseas scholarship to come home and support her.

Shannon is worried about the effect on her son.

Marg’s family don’t want her in the house when someone is sick so she can’t help out.

Regarding the relationship with a spouse or partner, people in this study talked about the loss of intimate relations, their partner becoming their carer and the strains on their relationship. They mentioned learning through experience what needs to be done to adapt to the situation. Despite this, the person with severe asthma sometimes felt that their partner wasn’t really able to grasp exactly how bad the situation was at times. Some people took the decision to remain single so as not to burden others with their illness.

Kim has lost interest in sex.

Marg says that her partner and friends don’t always understand.

Making and retaining friendships proved tricky for people with severe asthma. People we talked to felt socially isolated through having to avoid places where they may catch an infection, or where there are strong scents. They also had to ask sick people not to visit them, which was at times seen as being rude or fussy. Sometimes they were simply not well enough to go out. This led to a variety of emotions for people with severe asthma such as a lack of self-confidence and feeling left out, but at the same time not wanting pity or special treatment.

Diana has had to avoid people who smoke, and this has led to not participating much.

Kim doesn’t want pity or special treatment from her friends and tends not to go out.

People with severe asthma made friends wherever they could. Some found they lost friends because of their asthma, which was disappointing.  Lauren would like to think people would have respect for other people trying to manage their health. Not everyone found themself in this position—some people we interviewed felt they found out who their friends really were following their severe asthma diagnosis, and these friends were a godsend. It was even better if the friend also had severe asthma.

Justin has kept his friends from work after leaving.

Shannon’s friends turned their back on her.

Frank’s friends tend to forget that he has asthma and he doesn’t remind them.

Jemma was embarrassed but delighted to be able to call on friends in time of financial need.

Lauren found having a friend with severe asthma very helpful.