Support and support groups for asthma
Here we look particularly at the value of asthma support groups and meeting or knowing other people with the condition. A few people we talked...
Asthma and relationships, family and friends
Many people mentioned the importance of practical and emotional support from family, friends and work colleagues.
Being supported and having other people to talk to about asthma can be very helpful. It can also be important for people at home and work to know how to help in the event of an asthma attack. Where others in the family have asthma, this can offer helpful examples of living with the condition, although it can occasionally make people feel more worried about their own diagnosis.
Family relationships
While many people with mild asthma do not need help in managing their asthma, parents, partners, siblings and children may all be involved in various ways.
Those diagnosed as children inevitably needed support from their parents in managing treatment, but also emotional support and encouragement in living with the condition. Catherine remarked, “It’s not diagnosing a child with asthma, it’s diagnosing a whole family because that family is going to have to manage it.” Sometimes it can be difficult for parents to get the balance right between not being over-protective, or “wrapping them in cotton wool”, as Chris said, but also making sure their child is safe.
Tim, diagnosed as an adult, said that as a child his parents were so focused on his older sister’s severe asthma that they didn’t really notice that he had mild symptoms too.
Mary remembers her brothers being a great support, but also that they got less attention than she did.
In adult life, those who had a partner often said they were one of their main sources of support and reassurance.
Janes husband calms her down and helps stop her feelings of panic when her breathing is difficult.
Eve, who is blind, often relies on her husband’s help. For example, he made markings on her peak flow meter so she can read it for herself and suggested she keep inhalers “everywhere around the place” so that she would always be able to find one.
Melissa said her partner was “brilliant, it doesn’t faze him at all.” Often people said that their partner did much of the housework because dust triggered their asthma; some joked that it was a definite bonus to be let off the housework! Humour can be a helpful way to deal with things: Jan said her partner jokes that when she gets breathless “one of the advantages is that I don’t talk as much.”
Alice relies on her husband for help, but sometimes feels guilty because of the restrictions it places on his life.
Alices husband is very supportive but sometimes she worries about the impact her asthma has on his life. [AUDIO ONLY]
Managing a long-term condition can cause tensions within the family. A few people said their asthma might have contributed to the breakdown of their relationship. In Esther’s case, the demands of looking after her daughter’s asthma caused problems with her partner.
Asthma sometimes runs in families. Having a relative with asthma meant that sometimes the early signs and symptoms could be more easily recognised because they had seen it before.
When Riina first showed signs of asthma her mum recognised what it could be because her Dad has asthma.
Other members of Stephen’s family have asthma so he wasn’t too surprised be told he had it. His mum thought he may have been asthmatic as a child and took him to the doctors several times but he wasn’t diagnosed until recently.
Seeing other family members using inhalers and coping with asthma could be helpful too. When Susan was diagnosed as a teenager she said it was “no big deal” because she had cousins with asthma and she knew that if they had their inhalers with them they were fine.
When Charles was diagnosed with mild asthma later in his life he felt he was well-informed about it because his son had quite severe asthma as child. Other people said that having it in the family meant that they had seen “the worst side of asthma”. Stephen’s attitude was affected by seeing his mother suffer from severe asthma while he was growing up.
Seeing his mother being dependent on her medication made Stephen feel determined to keep his own asthma well controlled.
Some people even knew of relatives, often in older generations, who had died from having a severe asthma attack. Although these family examples could be worrying, often these things had happened in the past when asthma medication and treatment wasn’t well advanced, but it did make them realise that it can be life-threatening if not managed effectively.
Ann experienced extreme anxiety when she was diagnosed with asthma, partly because she had seen her mother suffer badly with it. But she also knows that medication and treatments nowadays are much more effective than in the past.
It can be frightening to see a loved one having an asthma attack, so it’s important that those around understand what to do and how they can help. Julie said her husband was frightened because “he didn’t understand it, because it wasn’t something that he’d experienced either.”
Margaret said when she was taken to hospital it was very distressing for her husband to witness because he felt helpless.
Dee made sure her children knew how to help if she had an asthma attack so that they wouldn’t be frightened and panic.
Even with a very supportive partner, it could still be helpful to have other people with asthma to talk to because, “As much as my husband loves me dearly and cares for me… he doesn’t have the problem of having to suffer with it or deal with it. And therefore cannot always fully empathise. He can sympathise, but can’t empathise. Simply because he hasn’t suffered from it himself.”
Some of the people we interviewed had children who had asthma. Esther’s daughter was in and out of hospital when she was very small and she found it very distressing. However, having asthma herself helps Esther to understand how her daughter is feeling.
Some people said they felt guilty that they had “given” their children asthma, because it can be hereditary. Mary (Interview 25) said she was “devastated” when her adult son was diagnosed with asthma recently because she didn’t want his life to be affected as hers had been.
Mark’s children both have asthma. Having asthma himself makes him worry more about them, but it also helps that he knows about it. Jan felt she had something to offer friends who didn’t suffer from asthma themselves but whose children did as she could offer them advice about how to cope with it.
Mark worries about his children coping with their asthma, but having it himself means he can understand how they are feeling.
Esther’s daughter had severe asthma when she was very young. It had a big impact on family life.
A few people with severe forms of asthma had to rely more heavily on family for support. Jenny had to give up work on health grounds and moved back to live with her parents when she was in her thirties. Because of this their lives are very much geared towards helping her cope.
Jenny has to rely heavily on her parents for support. Sometimes she feels guilty that she is so dependent on them at a time when they should be thinking about retirement.
Asthma UK has advice on asthma during pregnancy, and notes that some people may even find their asthma gets better in pregnancy, while others will see no change or find it gets worse. They advise that it’s normally safe to continue taking medication as normal during pregnancy, but Alice had decided not to have a child at all as she was worried that her steroid medication might affect the baby, and also that she wouldn’t have the stamina to look after a child. She said, “I didn’t want to pass on the risks of my children inheriting a tendency to asthma because I felt it had had such an effect on my life.”
Friends
People valued support from friends. Sometimes people made a point of talking about it with friends, but some said they didn’t always mention it to other people.
Tomas’ friends know that he has asthma. They don’t see it as something that would make me different to other people or exclude me because of it.
Friends can also be a source of emotional support, whether or not they also have asthma.
Alice doesn’t generally make a point of talking to others about asthma, but she values hearing about how two friends who have asthma cope with things. [AUDIO ONLY]
Sometimes it could be hard for other people to understand how important it was for the person with asthma to avoid their triggers, which could cause trouble with friends who had pets, for example. Margaret has friends who are doctors and she sometimes asks them questions about asthma or new medications.
Jane sometimes worries what other people will think. When she went on a group holiday she made people aware of her asthma but said she was concerned that people would think Oh my goodness weve got somebody with asthma, what are we going to do?
Also see Childhood-onset, Managing asthma: reviews and action plans, Support and support groups, Asthma in the workplace, Emotions and coping and Asthma attack and emergencies.
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