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.
Mark’s asthma nurse has the condition herself. He says she really understands, because she knows what it feels like.
Stephen’s GP has asthma himself and Stephen is encouraged to see how he has not let it affect his life.
Asthma UK is the main support organisation for people with asthma. Many of the people we interviewed found the Asthma UK website helpful as a source of information about asthma. They provide comprehensive factual information, some personal accounts of living with asthma, an online forum, Twitter feeds and Facebook groups where people can contact and talk to others with the condition, and an advice line 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.”
Jenny’s best friend has asthma too. It can be good to have someone to ring up and talk to, who understands what it’s like having the condition. [TEXT ONLY]
Online forums can reassure you that you’re not the only person living with the condition managing similar symptoms.
People explained what they gained from hearing others’ experiences, both face-to-face and online. Benefits include getting practical advice, tips and information, help with 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 was similar to her own, Peter said seeing other people much worse off than him can make him feel more positive 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.
Ann uses the internet to find information and likes to see videos of people talking about their experiences but I like to be able to click the stop button.
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 to 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”.
Peter has trained as a volunteer speaker for Asthma UK. He likes learning more about asthma and helping others, but he has also been helped by meeting others with asthma and hearing their experiences.
Eileen is a member of a group called Speak up for Asthma. She feels it’s important that people learn from each others’ experiences, and to help doctors and researchers improve care for future generations.
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 asthma.
Tomas is a member of Asthma UK’s youth forum who give the charity their viewpoint about living with asthma, and get involved in a variety of different activities to support young people with asthma.
Esther joined Asthma UK because she wanted them to organise a talk in her daughter’s school about asthma. She has encouraged her daughter to contribute to the Asthma UK website by sharing a positive story about how she has adapted to having asthma.
Some younger people we interviewed had taken part in a ‘Kick Asthma’ holiday organised by Asthma UK. 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. As Lisa pointed out “If they’re a similar age, it’s easier for you to understand”.
Social media such as Facebook and Twitter is also a big source of support for many people, especially young people, helping to provide information and a way to connect with other people who have asthma.
David volunteered at a Kick Asthma camp as part of the Duke of Edinburgh award. Seeing that other kids have the same kind of troubles and worries is important.
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).