Asthma

Support and support groups

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 to said that their GP or asthma nurse had asthma themselves which meant they had real experience of living with asthma and understood how it felt.
Asthma UK is the main support organisation for people with asthma. Many of the people we interviewed found the website helpful as a source of information about asthma. They provide comprehensive factual information, some personal accounts of living with asthma, an online forum where people can contact and talk to others with the condition, and an advice line on which you can phone to speak directly to a specialised asthma nurse if you need help, information, or just a ‘sympathetic ear’.

Finding factual information is really important, and some people like Dee felt that hearing other people’s stories was helpful because, "You’re actually listening to not the official line out of the text book, but you’re listening to “what does it mean to you in your day?” And that’s maybe a lot of what people would like to see.’ Peter commented, ‘I’ve got a high regard for my GP practice, but they’re not the only source of wisdom."
People explained what they gained from hearing others’ experiences, both face-to-face and online. Benefits include getting practical advice, tips and information, help in adjusting to having the condition, and general emotional support. As Val says, it can be good to know you are not alone, and sometimes being able to share negative feelings with someone else who can understand is a relief. While Val felt she got most benefit from people whose experience of asthma were similar to her own, Peter said seeing other people much worse off than him can make him feel better about his own situation.

On the other hand, not everyone wants to meet or chat to other people with asthma; just having an illness in common does not necessarily make a good basis for friendship. People talked about not wanting to dwell on their condition or be defined by it. Sometimes people could find it depressing or frightening – Belinda, for example, had been shocked and saddened by the death of one of her friends when she was at a school for children with severe asthma in the 1960s, even though in other ways the school was a supportive place to be.

Online forums and websites which post people’s stories offer a way to benefit from others’ experiences without having to meet them or take an active part oneself.
Some people felt inspired to get more actively involved in sharing their experiences. Asthma UK offers people opportunities to volunteer in different ways such as fundraising, raising awareness, campaigning for services and promoting the work of the charity, and helping advise experts and health professionals on policy issues. People’s motivation to take part in these activities varied but often it was a case of wanting to offer support and help to other people and to be able to ‘give something back’.
People expressed particular concerns about the importance of raising awareness in schools, not just for children who have the condition, but so that both teachers and other children will understand more about it.
Some younger people we interviewed had taken part in ‘Kick Asthma’ holidays organised by Asthma UK. These adventure holidays for children and young people with asthma combine physical and social activities such as abseiling, kayaking, discos and quizzes, with educational sessions about asthma. The holidays give young people a confidence boost, and parents the chance to relax for a week. They also offer older teenagers the chance to give support and encouragement to their younger peers. Lisa remarked that as a teenager she had found it really helpful watching a DVD her nurse had given her that showed other children talking about their experiences, and these holidays provide children with similar opportunities for one to one support in a fun and friendly environment. As Lisa pointed out… "If they’re a similar age, it’s easier for you to understand".
Mary set up and ran a local support group for about 10 years. Julie set up a similar type of group in her local area. Susan is a trained first aider and she uses her own experience of having asthma to help her train other people. ‘I actually train first aiders in treating people with asthma now because they like to have somebody who knows what it’s like’.

(Also see ‘Finding information about asthma’, ‘Dealing with health professionals’ and ‘Managing asthma –reviews and action plans’ for more about the importance of having a strong relationship with health professionals).

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