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Asthma

Emotions and coping with asthma

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.

Charles wasn’t worried when he got his diagnosis because the inhaler relieved the symptoms and his asthma has remained very mild.

Age at interview: 71
Sex: Male
Age at diagnosis: 40
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It didn’t worry me at all, because I needed relief at that time and that gave me relief and therefore I wanted more of it, so it wasn’t a question of having any reservations or fear. It was more a question of thank goodness someone has given me a bit of relief. And you know, it may be had I not had that at that stage, or in the, you know, the near period soon after, then I might have experienced more full blown asthma, as I would probably term it. May be with me, it was caught in time.
Many people had found that the best way to deal with having asthma was to keep a positive mind set, 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.

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.

Age at interview: 39
Sex: Female
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Trust me there are some serious days where I am absolutely sick to death of it. I don’t want to be different and I don’t want my health to deteriorate, but going in there with that attitude isn’t going to get me anywhere.And I think for those people who are newly diagnosed that is almost impossible, to go in there and be calm and clear-headed about it.

You can’t in the beginning, especially before diagnosis, because you haven’t, you might have no idea why you’re ill. Why you feel like you have no energy, why you can’t do certain things, why you can’t do certain jobs. You career can be affected by it. Your home life is affected by it. Your social life is affected by it. And I think people who are newly diagnosed have got to give themselves time to come to terms with it.And that doesn’t necessarily mean accepting it. For some people accepting you’re ill will never happen. But it doesn’t mean that you can’t get your head round it and deal with it. I think some people think the only way they can move forward is if they accept it, but you don’t have to.

You just have to find your way with it. And then try and get on with life and accept that you will have bad days. There will be days where you just think, “Oh, for God’s sake”. [laughs] “Give me a break and let me live my life”. But those days, the further you get on past the diagnosis, the less those days become, because it becomes normal. ... in inverted commas.

Yeah, if you sit and focus on what you’ve lost, life’s going to be hell. And you’re going to be miserable as hell. And, because if you dwell on it, you, it’s, you will end up thinking, it’s not ruddy fair. But you have to find things that you do like ….. and that you can do. And it is very hard, and it does take time. But you can get there and you can find a life whether …

I’m not so frightened of my health these days as I used to be. One, because I know I can manage it. I do live on my own and I cope with it.I work full-time. I’m off sick less than healthy people because I manage it. I travel abroad on my own. It’s not going to stop you from having a life, you just have to... find the life that suits.
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’.

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’.

Age at interview: 18
Sex: Male
Age at diagnosis: 5
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Well [laugh] I don’t know if it’s the best solution but who told me? I don’t know I’ve always, I presume my parents probably told me to not, never to like panic whenever I have an asthma attack and GP doctors tell me as well. And it’s also, [snap] I think it’s also recommended on these Kick Asthma holiday camps.

So what do you need to do?

Just keep calm. I think probably if you start to panic I think the asthma then maybe gets worse ‘cause you kind of like panic. You’re not thinking straight. So you may not reach for your inhaler. You may, I don’t know start to panic, start not thinking straight. You’ve just, you’ve just got to keep calm, just keep calm. Breathe slowly and deeply. Try to calm your breathing down. I think shortness of breath doesn’t help the asthma either so you try and like breath calmly, breathe deeply and it helps your asthma. But yeah so just keep calm. It’s really that’s the advice I can give.

So that gives you a sense of control?

Yeah it helps yeah, yeah. It gives you a sense of control of your asthma. Yeah. So you, you feel you’re under control. You feel your asthma’s not taking over your life and not taking over that situation. 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.

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.

Age at interview: 59
Sex: Female
Age at diagnosis: 54
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I kept a journal. That’s always been really helpful to me when I’ve, when it’s been bad because progress and recovery’s been, can be very slow, almost imperceptible and it’s easy for me to feel like I’m not getting better. And I have to remind myself that this has happened before and you’ve got better, so you will get better this time. But if I keep a journal I can look back a week and then I can see, “Oh yeah, this time last week I had real difficulty just walking round the block. And this time this week I’ve been able to walk as far as the shops and back”. And I can monitor the progress much more easily and I just found it really helpful. I also write down a lot of stuff about you know, just how I’m feeling. Because sometimes I feel angry that this is happening to me because it’s getting in the way of me doing what I want to do. So I kind of write some of that stuff down, it just helps me.

And I read a book, a friend recommended a book to me which is absolutely nothing to do with asthma at all It’s called ‘Fracture’ by Ann Oakley who is a sociologist, and it’s her story of what happened to her when she fell and broke her arm when she was at a conference in the States and how the medical profession saw her as a broken arm and not as a whole person. And, and that was some, some of what I was feeling as well, that people concentrated on my asthma and not on me and the effect it was having on me. As I say, my GP was, was very good because he would, he said, you know, “We’ve got to get this to fit into your lifestyle”. The homeopath was excellent at kind of looking at me as a whole person. But reading Ann Oakley’s book was really helpful to me. 
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.

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.

Age at interview: 24
Sex: Female
Age at diagnosis: 7
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The time in France when I woke up in the night and because my medicine wasn’t working it’s scary because you don’t feel in control of your symptoms. When you can just go and take your inhaler and you’re fine and you’re better it’s fine. And I, I sometimes I recognise, I can tell how bad the symptoms are because I’m used to them. So if I’m out in the cold and I’m walking up a hill I’ll probably get wheezy and I’ll know that if I sit down for a bit. I probably don’t even need to take my medication because if I just rest for a bit it will go away. And or if I just took my inhaler it would go away straight away so in that sense I’m. I know that I’m going to be in control my symptoms. I know how to make it better. It’s when it takes me by surprise and when I wake up in the night and I can’t make myself better that’s when it gets scary because I’m completely out of control of it.

I think just because there’s nothing I can do about it so there’s no, no point in having a negative outlook about it. I think you just accept it and move on and get on with things. So just treat it the best you can. And in, you know it doesn’t need to take over your life. You can if you’re treating it as you should then you should be able to do the normal things and go about things in a normal way without it ruining them.
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]

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]

Age at interview: 59
Sex: Female
Age at diagnosis: 18
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People are encouraged to, you know, manage their asthma themselves, self-management, which is my view, absolutely correct. One’s got to work out for one’s self how, how you’re going to live your life, you know, on a daily basis, and take responsibility for it.

And I do try not to do things which wouldn't, you know, wouldn’t make my health deteriorate. Well, for my own sake, but also for thinking well, you don't particularly want to call on, you know, medical resources unnecessarily. I might need them for more important or acute things (laughs). And I, I think, you do have to take as much control as you can and I think psychologically that's better than being sort of very passive about it. But one of the things that has given me confidence to sort of manage my asthma is simply length of time and experience, and I have, I feel, had very, very fortunate medical support, you know, the two main consultants that I've ever been under have, in their time, were both the top person in the UK, and that obviously gives confidence. And then my two GP practices both were, you know, very supportive, and that makes a lot of difference, even though they didn't know the GPs in particular a lot of asthma, their attitude and approach I think was, was very good.
 

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]

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]

Age at interview: 52
Sex: Female
Age at diagnosis: 23
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And I do remember being told quite early on, when I moved house and came to live in another area, I was given a very good piece of advice, which was that the best way to be asthmatic was to be an organised asthmatic. And that means keeping a note of your medication near your telephone or in your mobile phone or in the glove compartment of your car, or in your purse or something, so that if you’re ever, I don’t know, on holiday or away or you forget and you need to get to a pharmacy or whatever, you’re not guessing about it. Because even though you’re taking it regularly you can forget what the dose is and what the names of the drugs are. And the other thing was to take seriously the use of the preventative medicine and the third thing was, and I used to keep a diary in the early days. I kept a daily diary and then I got bored with that and kind of got to be able to live without it. The other thing was to keep a peak flow meter about your person. So I have one in my office and I have one at home and I have one in the car and I have one in the holiday home, which probably sounds a bit excessive, but if you wake in the night and you’re having difficulty breathing, yeah.

The next time I was hospitalised, I’ve only had that experience twice, I was hospitalised and nebulised and treated with prednisolone for another attack and that was because I misjudged how far down into breathing difficulties I was because I didn’t have a peak flow meter. And my reading had fallen below two hundred and I thought I’d feel great in the morning because this was the middle of the night and I didn’t. I just kept on feeling worse and at that point, there’s no point in using the reliever medication any longer because you’re well past that stage. So that taught me that, you know, your peak flow meter is an important piece of kit and they’re bulky, awkward things. It’s not the kind of thing you can keep in your handbag. Maybe one day somebody will invent a little neat, tidy handbag size one. But so then that’s what I do. I can go for years without needing medication or needing to think about it and if people ask me, you know if you’re filling in forms and they ask you about your health or whatever, I do have a tendency to forget that I’m asthmatic.
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.

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.

Age at interview: 34
Sex: Female
Age at diagnosis: 18
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The big thing I find is the impact not just on me but the other people in my family, I’m as I say, 34, I live at home with my parents because A, financially I’m on benefits, I can’t afford to live on my own, but also when I’m not well, I need someone to help me... and look after me. If I lived on my own, I wouldn’t be able to do half the things that I do because I would have to do all the washing, all the cooking, all the cleaning, whereas living with my parents, we have sort of shared roles. So I can, I do my fair share of bits around the house but I’m not doing everything so I don’t get – because I get very, very tired; that’s a side effect of the medication and the asthma, that I have a real fatigue issue – so if I didn’t live at home with them, I’d have to, I wouldn’t do anything, I’d, by the time I’d done my washing up, my washing, my cleaning, my weeks shopping, whatever, I’d be asleep. I mean, as it is, I have a nap in the middle of the day because it keeps me going. Also, I wouldn’t have my dog if didn’t live at home because, you know, she’s a young dog, she needs two walks a day, minimum, usually three; I can do one a day, but I can’t do more than that. So my parents not only have me at home but they have my dog as well.

It’s knowing, you know, each day, because my condition can change so fast, knowing each day, you wake up and say, “How are you this morning?” And the classic one, I’ll come down and say, “I’m fine.” “Oh, well, what does fine mean?” I say, “Well, I’m fine”. “Well, how’s your breathing? How’s your…” You know, and it’s just like, oh, for heaven’s sake.

Does it get a bit tedious after a while?

Yeah, but I can, I can understand why they do it, because my response, has implications for how they’re going to spend their day. You know.

And what about, generally, about your kind of, your relationships with each other, does it interfere with how you interact with each other, on a general basis?

Yeah, it depends, it depends what sort of mood I’m in, which sounds completely selfish, but if I’m in a quite a conciliatory, you know, I’ll let things flow over my, you know, just go, but other days, you know, red rag to a bull. Dad will say something or mum will say something and I’ll just flare … you know… and I know it’s not helpful and it’s not sensible, and, but it, it’s what happens, you know, and we’ll bicker over stupid things because, you know, that day I’m feeling a bit touchy or … sometimes, if I know I’m not well, I know I’m not doing so well, I get very touchy about people saying, “How are you?” So I’ll go, “Oh, I’m fine”, “But like, you’re not”. “Well, why did you ask then?” You know. Or, “You, you look a bit puffy”. “Well, don’t ask me how I am then”, you know.
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 60’s and 70’s when treatments weren’t so well developed and asthma wasn’t as well recognised as it is today.
 

Asthma disrupted Jane’s childhood because there were times when she wasn’t able to join in with her friends.

Asthma disrupted Jane’s childhood because there were times when she wasn’t able to join in with her friends.

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I think what I found most frustrating was because I had friends, but I was never up to date with them, because I’d be off weeks and they would you know, I’d come back and I wouldn’t know what they were talking about or what their interests were and it was difficult, because I couldn’t go out at nights with them because you know, I was never well enough to do that. So I sort of, I suppose became quite not introverted but, I felt that I wasn’t sort of part of any scene really you know, especially at school. I didn’t have any, join any of the clubs or anything like that. 
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.
 

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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’).
 

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