Catherine

Age at interview: 39

Brief Outline: Catherine, age 39, has had asthma (diagnosed at age 5) and a number of other health conditions since birth. She is white British, single and works with young people who have learning disabilities. During her childhood she found that she was unable to take part in many things and felt quite isolated. As an adult, Catherine has found ways to make life work for her, and is able to live a full and active life.

More about me...

Catherine has had a number of different health conditions from the time she was born including eczema and hay fever, and also problems with her lungs, but wasn’t diagnosed with asthma until she was around 5 years old. At the time she says asthma wasn’t that well recognised and less was known about the condition than today. Her parents struggled to find help for her, and felt at times as though they were seen as hypocodondriac parents. Catherine talks about the way in which her asthma impacted on her school days and remembers feeling left out because she was absent from school a lot, and when she was there she was unable to join in with a lot of things such as sport and outdoor activities. She says that she felt she was labeled as ‘different’ and as a result experienced bullying during her early years.

‘When I was little I was the only one in the whole school [with asthma] so nobody understood…’

The feelings of difference continued into her teenage years and she felt very conscious that she wasn’t able to fit in with the way other teenagers spent their time. She frequently felt unwell and was often wheezy and had numerous chest infections that made life very difficult for her. She wanted to be able to go out and socialise with friends but at the time pubs and places where her friends would go were impossible for her because of the smoky atmosphere which triggered her asthma. When she began living independently she began to find ways to cope and build confidence in herself.

Over the years she has been prescribed many different medications to control her asthma because although they have worked well at times, after a while they have become ineffective and so her doctors have tried newer or different combinations of drugs. In her interview Catherine describes how difficult it can be to have to get to grips with new treatments, not least because there are often contraindications between the different drugs she takes and so something that relieves her asthma may well have an adverse effect on another aspect of her health. She has found keeping a diary about how she feels has been a helpful and important way to help her to understand her own condition, as well as helping to explain things when she sees health professionals. Because of her complex health status Catherine finds that she frequently has to explain her medical history to the various consultants and health professionals with whom she comes into contact, and sometimes this can be frustrating. Over time she has found ways to make her consultations with health professionals more fruitful, but there have been occasions where she has felt that the treatment she has received has not been ideal. Sometimes it can feel as though she knows more about the condition than the ‘experts’. She has found that although many doctors know something about asthma, often they are not aware enough of how it interplays with the other conditions she has. Sometimes she has done her own research on the internet and found information that she has subsequently taken to her consultant, and this has been received with mixed reactions. Although she is articulate and well informed, Catherine can sometimes find it very difficult to get the treatment that she feels she deserves. She sometimes finds it helpful to take a friend with her to appointments for support, both practical and moral.

Catherine has many triggers for her asthma, including weather conditions, furry pets, house dust, pollen/grass, and household cleaning products. Stress and anxiety can also make her feel much worse. She has learned over the years to moderate her lifestyle to try to make things more manageable. One thing that she finds helps enormously has been to take regular exercise which helps to strengthen the lungs.

‘You just have to find an exercise that suits you…… as a result my lungs are stronger and I think that’s one of the reasons why I don’t have as many attacks and I control it and I don’t have as many chest infections.’

Catherine works full time and lives a full life, but over the years has had difficulties with some employers who have made her feel that she is not pulling her weight at work because of having to sometimes take time off for hospital appointments and illness, although she has also found that some employers have been extremely helpful and understanding and have accommodated her needs. She finds that generally many people are ignorant about asthma and tend to see it as something that is not very serious, especially because when people look at someone with asthma there is nothing obvious to see that indicates that the person has an illness. Sometimes because of this she finds that people can be very insensitive. Having asthma has had an impact on relationships sometimes with friends.

Catherine has had to make many changes to her lifestyle over the years but thinks it’s important to have a positive attitude, because she feels that if you dwell too much on what you can’t do, life would become intolerable. She has adapted her home to ensure that it can be kept as dust free as possible which means having as few soft furnishings and carpets as possible, and keeping things scrupulously clean.

Currently Catherine takes her steroid inhaler (preventer) twice a day which helps to keep the inflammation in her airways to a minimum, and she can vary the dosage according to how she is feeling each day… so if she feels she is getting a cold or feeling more wheezy, she can take a higher dose. During the day she may use her reliever inhaler if she feels wheezy or her chest feels tight and this will work to relieve the symptoms. She also takes a tablet each day to help ease her asthma and aspergillus (another lung condition). Catherine feels it is important that if she needs to use her inhaler during the day when she is with people, that she does so in front of them rather than going somewhere private as some people may do, because it is an everyday aspect of her life and she feels that if people see asthmatics taking their inhalers that will help to change people’s attitudes about asthma. Another condition that Catherine has is anaphylaxis (an extreme allergic reaction to many things) so she is mindful to keep all her medications with her at all times.

Catherine describes an asthma attack as ‘It’s like somebody’s sitting on your chest and they’ve got their hands round your throat and you can feel it. It’s like that there’s this huge weight sitting and no matter how hard you breathe in your chest wall feels like it’s not moving, at all.’

Catherine explains how important it is to know what things trigger your asthma.

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.

Catherine, age 39 said her childhood was disrupted by her asthma and other conditions, and she remembers feeling isolated, bullied and left out of things. Nowadays her friends’ children know lots of people with asthma and it’s better understood.

From the point that I was ten days old it became apparent to both my family and to the consultants at the hospital that I had numerous conditions but one of them was a lung problem. But obviously 39 years ago asthma wasn’t recognised as it is now and there wasn’t the experience with it. So it wasn’t until I was five that I got official confirmation that was the specific lung condition that I had, which I think gave enormous relief to my parents at the time because they were just floundering in the dark and being treated as hypochondriac parents. Obviously to myself it didn’t make a lot of difference at such a young age because I wasn’t aware of the implications of it and, and the effect it would have on my life. But as the years had gone on I think the impact has become quite apparent throughout school. At primary school it was a case of you couldn’t go outside and join in with PE because any severe physical activity would produce an asthma attack. The school had pets and a lot of the kind of outdoor lessons were sort of centred around the pet. But they set my asthma off so I was always kept separate, which of course lead to being labelled as different as a child. And then that always lead to bullying of course, which continued really throughout my whole childhood because I think back then I was quite rare. Whereas today my friend’s children, they’re in a class of 30 and half the class’ll have asthma. When I was little I was the only one in the whole school so nobody understood it...

Or understood why it kicked in, how it made you feel when it kicked in. Certainly as a teenager I became very conscious of having it because all you want to is fit in as a teenager and I couldn’t. PE lessons were hell.

Especially during winter anything like netball or hockey or cross-country, it was completely out of the question but the understanding wasn’t there, on the whole in the school. So you had to just try and do it and then of course you felt exceedingly ill. Very weak, you were always wheezing, then getting chest infections, because you were outside and with a poor immune system that would always make it worse. And school was hard. It was very hard. 

Catherine explains how important it is to get to know your own triggers so that you can reduce contact with things that may make your asthma worse.

I think you have to know your condition. And you have to put time aside to find out it and understand because quite often you won’t get told things. I was always told that my environment years ago didn’t affect my asthma. I knew that was wrong and now of course with today’s knowledge they were, I’m now aware that I was right. You know I have to keep soft furnishings to a minimum. Try and have hardwood floors. So reduce the dust in your house. Reduce the level of house dust mites in your house. Cleanliness is, you almost get OCD about it [laughs]. You have to keep a clean environment, otherwise your asthma will suffer. And you have to watch yourself and figure out what sets it off. I can go out in windy weather in summer and I’m fine. If I go out in windy weather in winter, I’m not fine.

It will induce if I breathe in cold air, it will induce an asthma attack and I’ve got to be aware of that. Whereas I don’t, practicing consultants are always aware of the many, many different things that can set it off.

Catherine describes the feeling of tightness in the chest as ‘like a huge weight’, as if someone is sitting on her chest.

It’s like somebody’s sitting on your chest and they’ve got their hands round your throat and you can feel it. It’s like that there’s this huge weight sitting and no matter how hard you breathe in your chest wall feels like it’s not moving, at all.

In reality it probably is moving a bit but because everything, all the airway passages have narrowed so much you’re trying to force through air and there isn’t the room for it to go. And it is like you’re suffocating.

Catherine has seen a lot of different consultants over the years and says it can be difficult when they don’t know you or your medical history. It can make a huge difference if you can develop a relationship with health professionals who are treating you.

I have other conditions as well. And it becomes a vicious circle, one drug that you might think for asthma is fine, but unless that consultant knows your entire medical history, you’re going to end up at some point with a contraindication. And one drug isn’t going to agree with another drug.

So you, I have found that I’ve had to take my entire life history and all of my medical treatments, all of my consultants at all the different hospitals, you have to carry it with you when you go because you can’t assume that they’re going to know because quite often they don’t. And trying to deal with the different consultants that you meet over time because once you’ve got the condition over a period of years you’re going to meet a lot of different healthcare professionals. And they’re all going to be different. Their ways of doing things are different. Their manners are different. And you’ve got to find a way to build a relationship with them because otherwise I don’t think you always get the care that you should have because they just don’t know you and they don’t connect with you. And unless you’ve got the confidence to tell them how you feel, if you’re happy about taking that kind of medication, how it makes it you feel, they’re not going to know.

And we always assume that doctors should know. And by this point in my life I’m well aware that sometimes they don’t. And that’s not because they’re lacking in skill or expertise, it’s the fact that your condition is constantly changing. Treatment is changing. Medications are changing and it’s a lot I think to expect them to always know. I was always very harsh on consultants when I was younger when it was ... well you know, what’s the matter with me, do something about it. Stop me from feeling like a freak, I want to go out. I want to do sports. I want to go to my fiends’ houses and I can’t. And I almost blamed them for not sorting it.

And I know now they can’t sort it. But if you find a good consultant who takes time to find out the impact on your life of that disease, it makes a huge difference.

A huge, huge difference, it means communication is much more open between the two of you. and they can prescribe things better and they understand you better. It’s, it’s a strange relationship and it does take a while. And of course in, especially in the realm of NHS cuts those consultants might not be there next time you go. So you, I think you have to be quite forthright and if you’re not that type of person, I think you suffer as a result. 

Catherine uses the internet for information but says you need to be cautious and ‘cherry pick’ what you find.

Presumably years ago it was more difficult to get information.

Yeah, there wasn’t information [laughs]...

No?

... at all, unless you joined a national organisation then really there was no other source of information. When, for my parents when I was a child as far as I’m aware the only society they were able to join was the Eczema Society and, yes, through that they met other parents of children who had eczema but also had asthma... so they were able to share experiences and do fund-raisers and awareness events. But that was really all they had.

Whereas now, if you’re fortunate enough, even if you don’t have a computer at home, quite often there are computers in libraries and cafes and things. If you can find out about other groups, other societies, local support groups, national organisations it’s so much more helpful.

And so how would you go about finding out on the Internet, talk me through what you would do.

I would open up your search engine and first off put in as many words as I want, because if you fit the word asthma in the Internet you’re going to have... five billion pages come up and you don’t want that. So sometimes I’m putting in asthma and aspergillus. Or asthma and allergies. Because I want to find specific sites that deal with that combination. But you have to be select about it.

And how do you go about being selective?

I start looking at, if they are in a national, if they are a government organisation to start off. So at the end of the web address is it dot gov, uk or is it dot ac for a university. Because the odds are if it’s from a university it’s an awful lot more reliable and...

So you’re looking for trust and reliability ...

Yeah.

... when you ...

Because lot...

... select ...

... of people stick information on the web and it might be people are doing their own blogs about their condition, but that doesn’t necessarily mean that what they’re saying is right or applicable to you. Because if you have asthma it doesn’t mean the next person next to you with asthma’s the same as you. Not at all. They could be hugely different. And also some web pages will be dot com or dot biz and they’re not specifically there, I know now through learning that those web addresses mean that they’re a business so your well-being is not necessarily at the top of the agenda on that web site, they’re trying to flog you something.

So I’m more wary. If it’s something like the National Asthma Campaign, or the Anaphylaxis Society who are backed and supported by professors or very, you know, leading edge consultants in that field, then I will read their web pages and any links on those web pages I am much more likely to trust.

So would you follow a trail though?

Oh.

You know, go through and ...

Yeah.

...look at other links....

Absolutely.

... and see where it leads you?

Because there might, there might be links that I’ve never thought of and I’ve never heard of. But they might then be on there. I mean, the NHS web site is very handy, there are lots of links on that web page but it assumes that you’re confident using a PC.

And I know lots of people who aren’t [laughs] so they can’t use that arena for gathering information. I do, because I spend pretty much all my life working on computers so I’m used to them.

Plus, I think, my generation are a lot more familiar with it anyway.

But do you think that is a barrier in some ways then, that some people aren’t ...

Hmm.

... au fait with ...

They aren’t au fait with how to cherry pick the information.

Right. Yes.

And I think that’s where they can fall down. Or they can be taken advantage of. Or frightened by it.

Hmhm. So you’ve got to be a bit cautious?

I would say you’ve got to be extremely cautious.

And when, if you find a web site you like the look of, look at their address, look at their contact information, look at who supports them.

And what sort of things will be, will you be looking for?

A very clear and obvious web site, because sometimes the less reliable web sites don’t look very professional. The, it’s, they’re very busy and there’s little pop-ups and flashiness and sparkles and flashing text and everything ... and generally a professional organisation that is aiming to advise won’t have that. It’ll be nice clear headings, simple, obvious tabs of where to go to next and what to click on.

So is it information and advice that you would mainly be searching for?

I personally look for technical information.

Not so much advice from other people but that’s because I’ve lived with it all my life and I now know a lot because I’ve had to live with it for nearly 40 years.

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.

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.

Catherine has had problems with employers who think she is lazy or disloyal, but says she’s also had some who have been ‘absolutely fabulous… and as a result, because you’re not stressed, your health is better’.

In the past I’ve had massive problems with, not so much with colleagues but with management. And with bosses. I do recall being told in one review that I was not loyal to the company because I went to hospital appointments. Which first off that’s a very mean remark. Two, it’s an illegal remark. And it’s being a bully.

The managers who have picked on me because of my health are basically, but playground bullies. They get off on picking on the weakest.

And there have been where getting up and going to work has been the hardest thing on the planet, way harder than being ill.

It must be hard also to ring up and say you’re ill [laughs].

Yeah.

“I’m not coming in”.

You don’t. I’ve found, I just, I’d have to be on my knees before I didn’t go into one particular job. Which made it even more hurtful that I was told that I wasn’t loyal and I didn’t work hard. Because…

Extraordinary.

… even if I had time off I made that time up and did extra … to compensate and they didn’t give a toss. You are seen as being a liability…

… and slacking. And I think actually if most decent managers open their eyes they can find that those of us who have conditions or diseases are actually much better employees because we go off, above and beyond to make sure our work is not affected by our ill health at all.

I’ve had employers who’ve just been absolutely fabulous and as a result, because you’re not stressed you’re health’s better anyway.

So that’s a vicious circle, if they get you upset …

Yeah.

… then your health…

Yeah.

… deteriorates because you’re feeling stressed.

And if that attitude, the bad attitude comes from management it’s never going to change. And all this, you know, Disability Discrimination Act, unfortunately I don’t think it means anything because if you’re poorly and if you’re having a very bad session you haven’t got the energy to take an employer to court.

No.

You know you might be right and you know the law’s on your side, you try proving it.

Don’t want to go down that road.

You don’t, you don’t want to go …

No.

… down that route because …

No.

… one, you might get labelled as a trouble maker, then other employers won’t touch you with a barge pole.

So is it something that you feel that you’ve got to kind of keep quiet about to some extent?

Yes. I think you do. I think when, you get to know people and they get to know you and you real, they realise there’s nothing different about being diagnosed with an illness, and not being diagnosed with an illness, you see, if you’re the right kind of person you’re going to work hard anyway. You’re going to be a good person and you’re going to be a good employee. And once, I’ve found, once I’ve got to know people I tell them more. Now of, that’s partly because some employers will treat you badly, there’s no doubt about it. Some of them do. But for those people who perhaps have never had any experience of illness they might not consciously discriminate against you but if you sit there in an interview and say, “Oh, by the way, I’ve got asthma and I’ve got whatever else so I have hospital appointments and I take medication”, they, just through sheer, unintended, ignorance, think,. “Hmm, right, hmm”.

That could interrupt the day’s work?

Yeah. “Hmm, might, might not give her that job then”. You know. And if it’s two people who are the same and they find out one of you has got something wrong with you, it’s highly possible you’re going to get dropped… because of that.

Catherine explains how costs can mount up when you have a chronic condition.

In the old days I used to buy the prescription as you went along and being a single person sometimes on a limited income you had to make a decision, were you going to buy that prescription or were you actually going to buy something else or pay your gas bill.

Because they are that dear. And I wasn’t able at that point a few years ago to have been able to buy the prepayment card because obviously that’s a lump sum.

And you have to pay it in one go. Now I do that because it is hugely cheaper. It’s still very costly but it is cheaper than buying them as you need them. And I think also it’s, it’s easier and it’s less of a worry because you know it’s already paid for, you just go in, whatever the doctor gives you get it.

And you take it. But having asthma isn’t just about the cost of the prescriptions, it’s the cost of lovely hospital car parking charges. It’s the cost of fuel getting there.

It’s the cost, depending on your job and how it’s salaried, are you losing pay because you’re not there. You know, if you’re an hourly paid person you might not get any money when you go into hospital.

And you’ve got to sit around for hours and wait for scans or blood tests or whatever. There’s that cost. And there’s the cost from your home point of view. If you’ve got to alter your home.

Catherine has found ways to exercise which suit her, especially swimming and going on the treadmill. She says, ‘I’m fitter now than I’ve ever been’.

Being unfit doesn’t help. Because the stronger your lungs are the better they will deal with asthma. So although it seems like madness to be told to exercise when you’ve just been told you’ve got lung disease, it does actually help. They are right in what they’re saying, you just have to find an exercise that suits you... whether it’s walking up and down stairs a lot, going swimming, going walking, going cycling, whatever. You find a way, and I’m fitter now than I’ve ever been.

And as a result my lungs are stronger and I think that’s one of the reasons why I don’t have as many attacks and I control it and I don’t have as many chest infections.

What exercise have you found that you are able to participate in then, that gives you that extra…

Treadmills are great... because then no matter what the weather I can still do walking. Exercise bikes. I like swimming as long as it’s not a particularly chlorinated pool. Sometimes if it’s a very chlorinated … pool, the fumes can aggravate your asthma. But just simple things like gardening can help. If you’re not allergic to pets, walk your dog [laughs] it doesn’t have to be a lot at all.

I think one of the things about asthma that I’ve picked up is, is about lifestyle changes and that ... people find, sometimes find it quite difficult that they have to stop doing …

Yeah.

… things, but I’m picking up from what you’re saying that it’s more a question for you anyway of, of finding other things, just …

Yeah.

... working out what you personally can tolerate …

Yeah.

… or do rather than …

If you …

… stop doing everything.

… 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, 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.

Catherine explains that it’s important to know your triggers and says ‘you have to keep a clean environment otherwise your asthma will suffer’.

I think you have to know your condition. And you have to put time aside to find out it and understand because quite often you won’t get told things. I was always told that my environment years ago didn’t affect my asthma. I knew that was wrong and now of course with today’s knowledge they were, I’m now aware that I was right. You know I have to keep soft furnishings to a minimum. Try and have hardwood floors. So reduce the dust in your house. Reduce the level of house dust mites in your house. Cleanliness is, you almost get OCD about it [laughs]. You have to keep a clean environment, otherwise your asthma will suffer. And you have to watch yourself and figure out what sets it off.

Duvets are not good if you’ve got asthma. Carpets aren’t good if you’ve got asthma. Lots of curtains and cushions aren’t good if you’ve got asthma. If you’re a child, soft cuddly toys no go area. And as an adult that means for me living on my own means having wooden floors, and although I’ve got rugs it means they’ve got to be super clean. Cushion covers have got to be washable. They’ve got to go in the washing machine a lot, if I do have curtains they’ve got to be clean. And that all costs money.

Catherine has had asthma since early childhood but can understand that for people diagnosed as adults it can be life changing.

They might have been perfectly healthy for 40 years and then they’ve got it. Which is hugely different to me having it all my life, because to a certain extent I’ve always been like this but for other people they may feel like they’ve had their life yanked away from them.

That’s a whole different ball game.

And it’s a whole different ball game.

There are going to be anger management issues there and resentment that I don’t so much have because... I’ve not known life without it.