Asthma

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 – 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 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.

Jane’s husband calms her down and helps stop her feelings of panic when her breathing is difficult.

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Age at interview: 59

Sex: Female

Age at diagnosis: 54

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My husband’s brilliant. He’s extremely placid and I can get, I sit here talking about it very calmly now but I can get very panicky and he just very quietly tells me to stop, That’s his usual thing. So, we’re walking along yeah, just last week we were up in London and we were we were crossing the Millennium Bridge and I started to get a bit, I started coughing and getting a bit breathless so I said could we stop and have a couple of puffs, which I did and then I said, “OK I’m fine now.” He said, “Well I just want to stop and look at the boats, life doesn’t revolve around your asthma, you know” [laughs]. But he will tell me to stop, “Just stop what you’re doing”. And I’ll start to remonstrate with him and he’ll say, “No, stop. Stop talking, stop walking just stop.” “And deal with this”. And once or twice when I’ve got, you know, it’s been a bit more, a bit worse and I say to him, “Do, do you think we should call an ambulance?” “No, you just sit there, stop, use your inhaler like the doctors have told you to and you know in five or ten minutes’ time you’ll be absolutely fine.”

So it stops you from getting that real panic mode?

I hope what is going in...

It’s like your inner voice...

[laughs]

... should be saying to you really. Stop.

I don’t know, I don’t know what’s going on inside for him but externally anyway he’s so, he always stays very calm.

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.

Alice’s husband is very supportive but sometimes she worries about the impact her asthma has on his life. [AUDIO ONLY]

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Age at interview: 59

Sex: Female

Age at diagnosis: 18

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Well, it must be an absolute bore for him because obviously it’s curtailed the kind of activities that we can do. I can’t go out on long walks with him. He has a dog and he's a great walker and it kind of, we have to tailor the sort of holidays that we have now to take account of, you know, my asthma and also I don't drive, so he does a lot of driving for me, taking me to places that I wouldn't be able to get to, either because I'd be too tired or because it’s too difficult, doing things like you know, carrying shopping and in, and in our domestic life, I mean he’ll do things like, when the washing, household washing is ready to go upstairs he carries it upstairs because that's something I can’t really do with my asthma.

So he's quite supportive.

Oh, he's very, very supportive.

But it’s curtailed some of his activities, in a way, I suppose?

I think it’s impinged on some of the things he might like to have done. Though I encourage him to go off and do things by himself, but it definitely, I think you, you never know what you’re going to get in life but it’s nicer to have a healthy, wealthier partner than, you know, one who isn't. And obviously he a must be you know, worrying about as we get older, you know, there might be additional care, caring duties for, you know, each other. So, yes, I think it, you know, it has an impact on him. Not, I think not so much my friends and family, because they're not so closely involved so they don't have to. But, for instance, a lot of my friends, particularly during the winter, they will come here and visit me because they know I can't go out. And that’s, you know, putting them out, I’m very appreciative that they do that, but...

But it’s interesting to hear that people find their way round, you know, so that you’re not just sitting there saying, well, I can't see people.

No.

You can find a different way to manage that.

They do. I think, I think at the moment, the worst impact is that I can't do my full share of caring for my Mum, because she lives quite far away, and I haven't got the stamina to travel there as often as I would like or even to do as much as I would like. And then that means a greater burden is falling, falling on my sister for example. And those are things that you don't think about when you know, when you get a diagnosis of asthma, you don't realise that that's how it could, you know, impact later on.

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.

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Age at interview: 22

Sex: Female

Age at diagnosis: 12

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I was like at school away for like, for the week at the time, so it was only like during the weekends I was at home.

And well my mum noticed initially that I was sort of coughing a lot during the night and I couldn’t really sleep. And so, well my Dad has asthma as well. So she kind of noticed it and she like, I don’t know, initially she just gave me some of what my Dad had like the inhaler and so on. And like to see if it works. And so it was like, and then they figured out I must have had asthma.

It’s only really because of my family that I know of. I don’t, I mean some of my friends might have it, and I wouldn’t know because I don’t know, it’s not, I haven’t been there when it necessarily comes up.

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.

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Age at interview: 25

Sex: Male

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Well, to be honest, part of me wasn’t surprised because there’s actually a history within the family. My mother has asthma and on my father’s side of the family I have an aunt and an uncle who have a particular lung disease. I’m not sure of the correct name. So I wasn’t particularly surprised. So half expecting it that way.

And my mum was actually always paranoid when I was a kid she would drive me to the doctor once or twice thinking, “He has asthma. He has asthma.” So but the doctor always turned me away.

Right and do you think, I mean what do you think led her to believe that you might have had asthma when you were a child?

I don’t know. To, I was a typical boy, out playing football until it was dark, come in clean wrecked. To me that was just playing football for four hours and it was time for bed. Mum noticed there was something wrong. I don’t know. I was just a kid.

And do you think that maybe she was right?

Then, no, I wouldn’t. As I say, I was a kid and I was giving out to her, you know, “What are you taking me to the doctors for? I’m fine.” That was the attitude I had. For all it, as it turns out, she probably was right. I don’t know.

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 he 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.

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Age at interview: 25

Sex: Male

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Living in an asthma household, I’ve seen the amount of medication my mum takes every day and I believe her body is dependent on it and she’s been like this for say for the past number of years where’s she’s been, she needs her medication and I’m always sitting there, even as a kid, looking at her and I’m just like, “I am not going to end up like that. I am not going to become so dependent on.” You know, I know people who go and take painkillers every day, every single day they’d be away taking painkillers and I actually, think to myself, “Do do they really need them or is that a force of habit?” Because that’s, you know, is their mind telling them “Oh shit, it’s two o’clock. Where’re your painkillers?” You know, [laughs] and I thought sometimes I think about it and it baffles me.

Where do you think this fear of being dependent on something has come from?

Just watching the way it affected my mum’s lifestyle I suppose, and other lifestyles. You know, I’ve aunties, I’ve uncles, once it’s something you become aware of you can see it quite regularly in people’s lifestyles from people needing medication to people needing coffee and a cigarette every morning when they get out of bed. I don’t know how much their body actually needs it or if it’s their mind telling them they need it.

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.

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Age at interview: 55

Sex: Female

Age at diagnosis: 53

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I think it probably contributed to the anxiety, the very bad anxiety that I've experienced initially because I, on the one hand I know that medication for controlling asthma has improved hugely over even the last ten years because my mother's experience has improved over that time and she talked to me about that. While on the other hand I know how it's affected her life and how it's limited her. So I guess whether I was concisely aware of it or not there was part of me that was saying, ”Oh no, I really thought that it wasn't going to affect me that I was one in the family who had missed this illness, but actually no.”

Did you know that you could get it later in life?

No, I had no idea.

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.

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Age at interview: 52

Sex: Female

Age at diagnosis: 23

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My children know there are inhalers in the glove compartment of the car. There are inhalers in the bedroom in the bedside drawers and there are inhalers in the holiday house. So my children, my family, my work colleagues, my friends would all know, to the point where they would say things to me, like when I’m packing, “Have you put your, have you packed your medication, have you put your inhalers in?” You know, so yeah.

Yeah, so they’re all very aware about it.

Yeah.

And how great an effort did you put into making them aware of it for you?

Well, with the children it was more that one of those asthma attacks, my, two of my children witnessed and they were very afraid because they, obviously, recognised that mummy was in real difficulties. So, you know, as a way, I suppose, of reassuring them I kind of said, “Look. We can do this if I ever have a problem and I say to you, ‘You need to go to this place and bring me this and then that’s it. We’re solved.’” You know.

So it was a way of actually giving them power to deal with the fear that they had.

But it was also a way of ensuring that if it was, you know, just me and them in the house and I did have difficulty but I, you know, I don’t, I never envisage myself being there again because I think I’m now sort of sensitised to it where it would, I’d pick it up at the first wheeze, the first tightness in the chest and do something about it then.

But yeah, people are, I mean you might think when you’re asking people to look out for your medication they would wonder why but they’re not. People really like to help. They’d rather know so that they can. So I think work colleagues, people who are close to you, you know, are more than happy to be aware and be helpful.

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 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.

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Age at interview: 49

Sex: Male

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And what it is like for you as a father having two children who’ve got asthma?

Well I’ve been through a fair amount myself so you know, you can give them a bit more help and understanding on that particular you know, subject. And you can say you know, “Look, just, not so much football, just a little, because this is what happened to dad, and dad was out playing for about 10 minutes”. Right, and, you know, I was wheezing away. And you know, they, they’ll, I think when you’ve been through it yourself and you know, they take more notice then.Because they know what’s heading, what can, what, they are heading for as well.

OK. So do you worry about them?

You always worry about your own children. But you know, only tiny bit, because, you know, things just make you worser.And, you know, it’s doing no good at all.

Do you mean worrying about them would be bad...

Yeah.

... for your asthma?

I worry a little bit.

Right.

But you know, you worry too much then it’s going to cause panic attacks and, you know, your asthma will start and things like that, so it would make it worser full stop.

Esther’s daughter had severe asthma when she was very young. It had a big impact on family life.

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Age at interview: 41

Sex: Female

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And then, when she was eighteen months old she became asthmatic. She had some episodes where we were in hospital, and from then on my life wasn’t really my own. Because she would get, if she had a cold, or if the weather was really cold, she might get wheezy, and would just be able to do nothing but sit on my knee for days. And just have to go and have medicine and keep a little, but she kept getting wheezy and the doctors were getting quite cross saying, “Are you giving her the puffers properly? Are you doing this?” But we did have several instances. She was in hospital seven times I think in those years. And it was, I didn’t really get a full time job. I worked from home, and I kept working from home, but couldn’t go back to work because I knew that I wouldn’t be able to keep a job down, because at any minute the nightmare might begin where she would be poorly and I’d spend three days just looking after her, and not being able to think about anything else, let alone other responsibilities.

I do think that people should know how much it affects you. And I, with [daughter] illness obviously it’s affected her. She’s been ill, it’s been dreadful for her. She’s got an absolute horror of needles and she hates pain, and that’s probably because she suffered so much of it as a child.

But also the impact it’s had on my life is unbelievable, and it’s kind of very hidden isn’t it from policymakers and other people, that you don’t see that. But the knock on effects of a serious illness like that is huge, and I think I needed to express it really. I’ve suffered [laughs] from her asthma. So I wanted to make sure that people knew about it and how it kind of affects you.

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 30s. 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.

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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.

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. She was worried that her steroid medication might affect the baby but 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’.

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Age at interview: 16

Sex: Male

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What about your friends? How have they responded to you having asthma?

They.... My friends are pretty good about it. They don’t, they don’t see it as like something that would make me different to other people or exclude me because of it. And they do understand that if I am short of breath or if I am coughing that it is because of my asthma and they do respect that in some ways.

Has it always been the case or now that you are a teenager your friends, you can talk to your friends more about it or?

Yeah I would say now you can talk more. Now probably now more than ever because just early teens was, you know, you, you could. My friends weren’t really mature enough to talk about something like that about but now that I’m grown up a bit then you, you just seem as though you can have a one-on-one conversation with someone about it and feel fine about it. Just feel good to talk about it and it, to anyone like just to get it all out.

Everybody you know, knows that you have asthma or what?

Yeah, yeah most of my friends know and all my family know. So basically everyone knows I have it.

You said something about your family providing you with a lot of support. Can you tell me more about it?

Well they, they’ve never stopped me from doing something I’ve wanted to do. They, they’ve always warned me about make sure you take your medication before you do it but they’ve never said, “No you’re not doing it because you’ve got asthma”. They’ve always been quite supportive and said, “Don’t let it get in the way. If you want to succeed then don’t let it get you down really. Be, be cautious about it but never let it stop you from doing what you want to do.”

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]

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Age at interview: 59

Sex: Female

Age at diagnosis: 18

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I have got one friend who has asthma and when we were at school together I didn't know her very well, I only became friends with her subsequently, and it was only a few years after that that I discovered she'd got asthma. And just occasionally we exchange views. Hers is much better controlled than mine. She's a very knowledgeable person generally, so if she ever says anything I always take notice of that. And then an older friend of mine has developed it in kind of later age, I mean, you know, post sixties and we sometimes exchange information about symptoms and also you know about treatments, but generally, I don't talk to people about it.

No, and when you do, when you have done with your kind of friends, what benefits do you think there might be to sort of sharing those experiences?

Shared experience I think is very useful in itself, and you compare your experience or their experience, and you also get tips for, you know, what, what to do or not, or what not to do And also find sometimes if you say, “Oh, well such and such a thing happens”, and the person says, “Oh, yes that happens to me too”, you think, “Oh, good, I'm not such a, like a freak”, you know.

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 we’ve got somebody with asthma, what are we going to do?

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Age at interview: 59

Sex: Female

Age at diagnosis: 54

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I do worry about what other people think about my asthma, you know. So, if I’m having difficulty breathing and I need to use my Ventolin, my blue inhaler, I’m quite comfortable with that. But I worry about what the people around me think. And sometimes people will say. “Are you all right?” And I just say, “Yes”, you know, “Thank you for asking but I’m fine and I’ll let you know if I’m not”.

We go off on group holidays, we’re quite active people. And I worry for the other people in the groups. So I worry for the leaders. When you’ve had to fill in a form where you have to declare any medical history, I’ve just done one this morning, and I become concerned that they’ll think, “Oh my goodness we’ve got somebody with asthma, what are we going to do?” And actually I just want to say to them, I’m fine and I can manage this. And I’ll let you know if I’m not.”You know.

Do you, don’t want to be a bother.

No.

To other...

That’s right.

.. people, or have them have, feel that they’ve got that responsibility.

Yeah.

Yeah.

Yeah.

I suppose that just takes a bit of getting used to, doesn’t it? It, you know, if you’ve gone all your life without having this condition and then...

Yeah.

... all of a sudden it’s there on forms and things and ...

I think I felt quite self-conscious with using the blue inhaler to start with. Now I just do it...thinking, without thinking about it.

Do you think enough is known generally about asthma, that, you know, that people generally, that you come across, know and understand about it and...

No, I don’t think there is. I think people have that perception that I had that it, you know, that it, it’s something that kind of needs emergency treatment always. And it does sometimes, but not always. And people don’t know what to do. So I carry a card with me that I got from Asthma UK that tells people what to do. One of the key things on that is that, that the person should be left sitting up and that you shouldn’t lie them down. Almost everybody that I’ve spoken to about that has been surprised. They’ve said their first reaction would be to lie the person down. Actually it’s the worst thing that you could do...

Is it to keep the airways clear...

Yeah, it’s much easier for me My symptom, my, the most common symptom for me is coughing. Much easier for me to cough if I’ve sitting up...

Right.

... than if I’m lying down.

(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’).

Last reviewed August 2017.