Living with asthma can take some time to get used to. In our interviews people talked about how they felt when they were first diagnosed, what it was like having asthma as a child and as an adult, and learning to manage it and accept it.
For most people asthma need not involve any major life changes, but it can be disruptive and throw up uncertainties.
Charles wasn’t worried when he got his diagnosis because the inhaler relieved the symptoms and his asthma has remained very mild.
Many people had found that the best way to deal with having asthma was to keep a positive mindset, focus on things you can do rather than things you can’t, and find out as much as possible about how to control and manage symptoms.
Catherine says that it can take a while to come to terms with being diagnosed because there are so many uncertainties to start with but gradually you work things out.
Fear and anxiety about the possibility of the asthma getting worse or out of control were widespread, even amongst people whose asthma was normally well-controlled. This could be a general feeling of being vulnerable and worrying about what the future might hold, but also more specific fears of having a serious attack. People who had experienced a frightening asthma attack said it was difficult not to panic when symptoms begin to feel as though they aren’t under control.
Mark’s anxiety stems from a childhood experience when he had been hospitalised. “The worst thing I think for me is, is that I find wheezing very frightening and very terrifying. And I think that is because it’s put me in hospital in the past.”
Jenny explained that stress and anxiety can bring on an attack. “If you’re breathless and then you start panicking, worrying and getting anxious about it, it just spirals, and I now know that anxiety and stress are one of my big triggers.”
People had experimented with various ways to reduce stress and anxiety such as daily meditation, yoga or breathing techniques and taking regular exercise, which can help to improve physical symptoms. Some said that when they started to feel a sense of panic it was helpful if a partner or friend could remind them to keep calm and reassure them it would pass if they didn’t panic.
David has learned that it’s important to stay calm when you’re having an asthma attack. If you keep things calm you feel that you’re in control of it. You know what to do. You can deal with it.
A few people said they had found it helpful to have counselling, although there may be a wait for a NHS referral. Jane kept a journal when she was first diagnosed, and found it useful to be able to look back and see how things had progressed or changed.
Jane found it helped to keep a journal so she could monitor her progress more easily, and it helps to write down her feelings sometimes.
Good medical control of symptoms was also important. As Philip said, “I put my faith in the inhaler that it’s going to work, and I don’t have to worry about anything else”.
Nicola has occasionally found it difficult to control her asthma, which was scary. But she has learned that generally she can control her symptoms with medication or by sitting calmly.
Learning how to manage the condition and keep symptoms to a minimum can take a while, but finding out as much as possible helped people feel in control and feel more able to cope. Building a good relationship with their asthma nurse can help people feel confident about asking for help when needed. Learning to be confident using inhalers is an important first step. Some people said they felt embarrassed about using them in public and that they tended to go somewhere private to use them, but others were relaxed about it or felt strongly that using them in public helped make it just part of normal life.
People with mild asthma may find the condition makes little difference to their daily lives. But sometimes it may limit what people can do. Often people said it’s important to focus on what you can do, rather than what you can’t and that a positive mental attitude was the best way to deal with whatever life throws at you and feel in control.
Alice has learned to control and manage her asthma, with the support of health professionals and thinks that must be better than being sort of very passive about it. [AUDIO ONLY]
The best piece of advice Dee was given when she was first diagnosed was to be an organised asthmatic’ She has worked out ways to make sure she is able to manage her asthma that help her to feel she is in control. [AUDIO ONLY]
Jenny, who has a very severe form of asthma, has had to give up her job and now lives with her parents and depends on their support which can sometimes feel difficult.
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.
Other people also said they felt guilty about the restrictions their condition might have on people around them, or if their children had inherited their asthma. Alice wasn’t able to travel to help look after her elderly mother as often as she would like, and felt that left the burden of support rested on her sister’s shoulders.
Some of the people we interviewed had had asthma since childhood and were used to living with it now, but some described how they had found it difficult as children, particularly back in the 60s and 70s when treatments weren’t so well-developed and asthma wasn’t as well recognised as it is today.
Asthma disrupted Janes childhood because there were times when she wasn’t able to join in with her friends.
People who had been diagnosed in the last couple of decades, when they were children or in their teens, had benefited from more effective medications and greater awareness, but nevertheless having to make adjustments to daily life can be difficult. Tomas said that when he was younger he sometimes felt disappointed and angry because he couldn’t always join in things his friends were doing, and it worried him that he needed so much medication. Faisil found it difficult not being able to do sports with the other boys. Nicola found it scary waking up in the night sometimes feeling wheezy and breathless.
Being diagnosed with asthma can throw up all kinds of questions and feelings. Sometimes people who were diagnosed later in life found it difficult at first to come to terms with being told they now had a lifelong condition. Val wondered how someone who had always been fit and healthy could suddenly develop asthma. Esther said, “I thought of myself as a really healthy person, that couldn’t suddenly, in their thirties, become ill with a condition. I now accept that I’m asthmatic, but for ages I kind of didn’t, I was in denial. I didn’t really believe it.” Esther had always been against taking medication of any kind so it took a while to accept that she needed to use her inhalers regularly.
Even where people had lived with asthma all their lives, at times it can still feel unfair or a struggle. Catherine suggested it can help to be able to talk about things and share experiences with other people because you can learn from others “we can all feel life’s not fair but we all deal with it differently”. Some people found it helpful to join online forums or support groups such as those offered by Asthma UK.
Learning from others can provide useful practical information and tips, and also emotional support. Some people we spoke to had volunteered to give talks and help advise other people about asthma, including helping out at a Kick Asthma camp organised by Asthma UK. Sometimes people found that supporting others with asthma could make them feel better about their own condition.
(Also see Support and support groups, Finding information about asthma, Being diagnosed with asthma, Managing asthma: reviews and action plans, Relationships, family and friends, Childhood-onset, Exercise, diet and other lifestyle issues, Asthma attack and emergencies and Advice to others).