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Lynsey - Interview 14

Age at interview: 23
Brief Outline: Lynsey was diagnosed with Cystic fibrosis at birth and says that her parents and now her husband are most supportive. She and her husband would love to have a child and they have discussed all the implications involved in such a decision.
Background: Lynsey lives with her husband and works full-time as an Expert Patient Adviser for the Cystic Fibrosis Trust. Ethnic background/nationality' White British.

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Lynsey was diagnosed with Cystic Fibrosis at birth. She says that, for her parents, bringing her up meant a lot of organising. This included learning to do her physiotherapy, taking her to have her treatments at hospital, making sure that she was eating properly, giving her medication, etc. She says that these are time-consuming, routine tasks and her parents coped really well. 

When she started school she found it a supportive environment. Every day at lunchtime she had to go to the headmaster's office to collect her Creon tablets and her teacher made sure that she was first in the queue to get her food. At primary school although she felt special, she also felt appreciated, and it was not until her teenage years at secondary school, when her peers began to ask questions and a few called her 'druggy Lynsey', that she realised that she was living with a life-threatening condition.

As a teenager she found out that she might not live very long and that was an extremely upsetting experience. She remembers that she began to 'rebel' against having cystic fibrosis by not complying with her treatment. But this attitude was short-lived, as she understood that she risked health complications that would make it difficult for her to achieve her goal of going to university. Her parents encouraged her and reminded her to take her tablets and do her physiotherapy but otherwise left her to it.

She said that the transitional stage of moving from a children's to an adult's clinic takes place alongside other significant events in a teenager's life and that it can be both an exciting, but also a scary, experience. A teenager has many things to think of like GCSE's, deciding about career choices, worrying about boyfriends, etc, and as a result health and treatment may not be top of their priority list during the teen years.

Lynsey says that so far she has achieved everything she wanted; going to university, doing the job she loves, getting married but the one thing missing is having a child. She and her husband would love to have a child and they have discussed all the implications involved in such a decision.   

 

In her teens she became aware that cystic fibrosis is a serious condition. Her response was 'to...

In her teens she became aware that cystic fibrosis is a serious condition. Her response was 'to...

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I maybe, towards my teenage years once I realised that it was a life-threatening condition that was something that I hadn't previously been aware of. It's not maybe something you necessarily want to sit a five-year-old down and discuss. And there was not actually any official discussion. It was just a matter of at one day I don't know how I just found out that I might not live very long. And that was obviously really upsetting. And I think that's when I started to go off the rails a little bit. Not to the extent that most people do. But I started rebelling. I didn't want to take my medication. I found that if I didn't take my medication for a few days it didn't seem to have much effect on my health, my immediate health. 

What I didn't realised is that long-term it, it had a massive effect because it would lead, if I didn't take my vitamins it would lead to deficiency. If I didn't take my enzymes it would lead to bowel problems. And so obviously I was doing myself more harm than good. I mean I gradually got over that. I just started to mature and started to see that really I was being silly. I was being immature. There was nothing to be gained by not taking my treatments. 

By this time I was doing physiotherapy twice daily but it was on the night time when I was watching Coronation Street it wasn't a huge burden. I mean I had to do it and I was sick of doing it. It was very monotonous and, you know, doing it over and over again every day but I had. My mum and dad reminded me to take my tablets, getting on at me to do my physio. And, you know, I started to do those things again gradually on my own. I think I, my, my parents just left me to it. Basically, they said, 'Here's your treatment, do it or don't do it'. But they would gently, gently push me towards doing it and gently remind me. And eventually I just got to the point where I wanted to do it for myself. Particularly as I went to university which followed on straight from 6th form. 

And I met my boyfriend whose now my husband. And he was very encouraging and I think when you meet somebody special. Maybe not even when you meet somebody special but you reach a point in your life where you think, 'I want to be around to be with this person' or 'I want to be around because I don't want to', you know, 'Have my family have the', you know, 'Go through losing me at such a young age just because I couldn't be bothered to do my treatment.' And there's that sudden realisation that you've just been rather selfish and rather [ha] silly. But I think that every person, you know, might go through that and I think you have to go through that and come out the other side to be able to appreciate how lucky you are to have all the treatment and medication and technology that's available now.

 

Felt unsure about being transferred to the adult clinic at the age of fifteen. Found it a...

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Felt unsure about being transferred to the adult clinic at the age of fifteen. Found it a...

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And it was actually when when I was a child that I really just sat there and it was the adults doing all the talking and they would sometimes ask me how I felt. You know maybe just emotionally or just in general. But it was very much my parents who were very much in control. So you know, it was very much of a shock when eventually I went to the adult clinic which I actually transferred there quite early. I think I was, I'd just turned 15 and I was a bit of a trouble-maker. It's when I just started to go through my trouble phase. And I don't think that the paediatric team felt they could cope with me anymore and they went, just shipped me off and said, 'Right off you go'. 

You know and I remember feeling really sort of scared because I was like, 'Oh gosh I'm going to'. They were saying things like, 'Oh you've got to start talking to the doctors now. You've got to answer all the questions.' And I was, you know, thinking, 'Well I'm going to have to go home and you know, revise all the tablets I'm on because I don't even know what I'm on'. You know, I just take them. You know I haven't actually looked at labels. And they were asking me, you know, 'Are you on acidic acid???' And I'm thinking, 'I've never even heard of, you know, acidic acid???' But it turns out I was on it  and had been on it for some time. It's just that as a child my parents had completely been in control of my regime and suddenly they were allowing me to do it on my own. And I remember, also remember feeling that very grown up because I felt that I was in control and in a way it was the next step to adulthood and I did feel. When you're a teenager you constantly want to prove to everybody that you're grown up and that you can take responsibility for yourself and you know, 'Oh just stop treating me like a kid' is, you know, typical, typical saying. 

And in a way at first I felt scared but then I felt a bit excited because I was like, 'Oh well you know, if I don't want to take my treatment I don't have to'. And if I don't want to do my physio, ooh I can, instead of watching Coronation Street doing my physio I can just sit and watch it on the sofa and not do my physio.' And I thought that was great. And that was rather [laugh] silly of me but I did feel as well that the doctors I was, I just felt I was a bit too young at 15. I didn't know what to say. I didn't know how to present myself. I mean I just felt really embarrassed when they asked me. I mean I, I thought I was embarrassed when they were asking my parents about it but when they were asking me about my stools it was even worse because I would have to answer. And what I found really annoying about some doctors that were maybe training like medical students were that they were actually embarrassed as well to ask the question which makes, makes you feel even. You know it makes you feel so awkward because you're like, 'Well you're the doctor'. 
 
 

She was unprepared for her transition and found it hard. As a teenager there were other things...

She was unprepared for her transition and found it hard. As a teenager there were other things...

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But I do feel that the transition process could have been easier. I mean the steps now that they take that are so much better in preparing people for transition. I don't know or if not that makes it any easier I only have experience of what, what you know, what I had to deal with. But I think that with transition there are so many other things going on. You've got your GCSEs are maybe coming up. You've got life-changing decisions as I've just discussed about, you know, career and things. And you know then you've got all the worries of I haven't got a boyfriend or, you know, or I fancy so and so and all the usual teenage problems on top of that. And it [ha], in the meantime you're actually trying to take your medication and you're thinking. You're trying to please your parents. 

And I think that transition can be very hard. If I was going to say that any point of my life so far has been difficult I mean university was, you know, pretty difficult but I would say transition was the hardest part because it, it's at an age. It's, it's just that age where you've got so much going on. And your priorities are not necessarily your health but everybody expects you to put your health first and that's a really hard decision to make. And I wouldn't blame anybody for you know, let it, sometimes let, letting their treatment slip because it's so hard to keep all those balls juggling. And I think that maybe there needs to be a more real appreciation of that in, you know, the medical world and maybe needs to be a bit more support for patients and. I mean if they don't get it again ask, go look for it.

See if there's somebody that can maybe help out and help you prioritise. Even if it's just to, to look at where you're going and the types of treatment, assess your treatment if you're feeling it's too much. You know.

 

She and her husband would love to have a child and their families are supportive. Feels that if...

She and her husband would love to have a child and their families are supportive. Feels that if...

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And in terms of our marriage now we've discussed the option of children and there are. We have come up, I mean myself and [name], my husband don't have any problem with us having a child  that we know of. He was recently tested to see if he's a CF carrier of the gene and that came back negative. So there is, there is still a slight risk but it's a significantly reduced risk that our child will have CF which is a relief. Because of the things like cross-infection which could be, you know, put my health at risk and the baby's health at risk. But certainly it, it's something that we would consider. Not necessarily having a family but having a child would be the best thing ever. And having a little Lindsay running around, you know, would be great. But that we have come up against opposition from other people's attitudes who we thought would give us support. Friends that we thought would understand that have maybe turned around and said, 'You don't deserve to have children. I think it's disgusting you want a child. It's so selfish. You have a limited life expectancy'. And I just say to them, 'It's none of your business'. 

And at the end of the day we have sat down and we have discussed this over and over again. We know that my life expectancy. I could. The life expectancy is currently 31. You know I could suddenly deteriorate next week. I could live until I'm 60. If I live until I'm 60 I just feel what an empty life I would have had. What a missed opportunity it would be on the off chance that, you know, I could not, not live very long. 

I just feel that having a child would give me an incentive to stay alive not that my husband's, my poor, long-suffering husband isn't an incentive to stay alive, my family and friends and everyone else. But even more so because I will be a parent and I will be responsible. And you know, I would like to think that I would be able to see them grow up. I've achieved everything else in my life that I wanted to. I've felt that I have been normal to an extent. I've been. It's been great that I've been able to do so many things and feel so equal to all of my friends. That having a child would be the icing on the cake. If I, if I can't do it it's not going to be the end of the world. But it would be, it would be [laugh] really the only other thing really that I'd want to do. And I just hopefully will, we'll have that chance and we'll see. But for all the people that are very negative about it I just hope that if we do have a child that they will see that I will be a very good, I know I will be a very good parent. I will be a very loving parent and I just hope to prove them wrong and live until I'm sixty, sixty, seventy collect my pension with any luck you know and prove everybody wrong really [laugh].

 

Her primary school accommodated all her needs and made sure she was included. At secondary school...

Her primary school accommodated all her needs and made sure she was included. At secondary school...

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When I went to school my mum made quite a few arrangements to make sure that I fitted in. I wasn't treated any differently from any of the other children. She made an arrangement with the headmaster that I have my creon enzymes put in the headmaster's office and every dinnertime I would have to go get them [laugh]. And it would be rather embarrassing because I wouldn't be able to reach the top of the cabinet and he. I would always have to ask him to get them down for me. And if I didn't go to get my tablets he would know because I wouldn't go to his office if I forgot to go get them. So it was a good way of him making sure that I took my tablets and also you know to control them in a school environment. 

And another perk of having CF that was rather good was that I actually got to be the first in the queue. Because [laugh] I, because of good nutrition because it's so important to, to eat lots of food they, they felt that by putting me at the front of the queue it would make me feel more appreciated. And I got to take one friend with me in the queue so I was a very, very popular child [laugh]. Because everybody wanted to go with me first in the queue.

I didn't really get bullied in primary school. I mean I wouldn't say I got, really got bullied at all. In primary school it was very much. It wasn't really an issue. None of the children really brought it up. They'd ask why does Lindsay take a tablet. My mum did actually go in and give a talk on CF and there was a CF Trust video that she took along with her to show the children. And I think that helps because they got all the questions out in the open there and then. And silly questions like, 'Can you feel the tablet when you swallow it? And can you feel it digest your food?' And you know, 'Why does Lindsay cough all the time?' and things like that. You know it really helped and my school friends to understand. And it just became, it didn't become an issue at primary school. 

It was only in secondary school that people started to ask. And oh like, 'Ooh what's wrong with her, druggy Lindsay' and things like that which were quite hurtful because I was a very hard-working, young girl and I didn't want to really be associated with, you know, drug-taking which was very naughty you know. And it maybe battered my self esteem a little bit but the, the best advice that my mum could give me was to just basically ignore it, move on. Just ignore those people they're not worth listening to and to get my head down [ha], do some work which is what I did. And it certainly didn't put me off school. I enjoyed school so much and I found that my friends were really supportive. There were only a small few people that really knew what CF was.

 

Talks about her own experience and gives advice to young people with (CF) about how to go about...

Talks about her own experience and gives advice to young people with (CF) about how to go about...

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I went to the Career's Advisor and, when I was about 14 and they were completely rubbish. They didn't even know what CF was. They couldn't advise me on any of the jobs that I needed. I actually rang the Cystic Fibrosis Trust Helpline in tears and, and said, 'Well what jobs can I do because the jobs I can't do there seems to be a big long list? And everybody's so keen to tell me what I can't do. What can I do?' And after that conversation on the helpline I did find it really helpful to sort of gain a bit more perspective and try to be a bit more positive because I think it's very easy for people to be so negative about things particularly if they don't understand them and to try put up barriers. 

But I was eventually I, I decided what I wanted to do and you know tried to stick at that and go, go down the best career path that I could. I mean I had originally wanted to go into journalism but even then, even when I made that career choice I still hadn't completely thought it through, the long hours, the, the lack of pay, the fact that you'd be on call all the time. You'd have to travel maybe all over the world. You know would I be able to get insurance. Would my lungs be, you know, would I be healthy enough? And I do think it's really hard to, to try think, 'How will I be in ten years time?' Because nobody knows and to be able to try weigh that up is so hard especially when you're a teenager and you've got so many other things going on. And then you've got to add CF into that equation. You know so I, I just not, not guesswork things you know but I, I tried to do the best I could with the information I had at the time and make informed choices. But I did feel that I could have maybe gone and asked for more support and got more information, got more facts.

I mean the Internet now I think is great because when I was growing up it wasn't really. It was still sort of taking off and it wasn't very widespread. I certainly didn't have access to the Internet at home. And I think now it's great that so many people can have access to the Internet and to find out things. Get advice and go on forums and things.

Ok. What would be your advice to other young people regarding career choices?

Regarding career choices, I'd say at the risk of sounding boring maybe an office, ideally an office job would be best, nine to five. I mean obviously office jobs can be stressful but they tend to be more emotionally stressful than physically stressful and I think that physically we, we already have so much to contend with. We have so much treatment to do that you know, emotionally it would be better for people to do, you know, something that's maybe mentally challenging rather than the physical all the time. 

That's not to say that I don't want to encourage anybody to maybe go out and be an athlete but they have to be realistic. You know, and things like teaching and doctors that, you know, there's no reason why people with, with CF can't go into those areas and go into a profession but they need to look at the long hours, if they'll be able to cope. In terms of university and then going into a high-powered job do they have that support network. What's they're health like. And you know what's their drive. Are, are they doing it for the love of the job or are they maybe just doing it for the salary. If they're just doing it for the salary then maybe it's the wrong career option because they need to be able to do something that they really love and that they can get out of bed every day for. Because having CF some days can be so tiring and such a struggle that you really need to enjoy what you do. 

And I would advise anybody to go out and to seek as much advic
 

She describes how her mum had to put her own life on hold because she spent all her time and...

She describes how her mum had to put her own life on hold because she spent all her time and...

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I do know that I had quite a bit of hospital treatment when I was younger and we first moved back over. And my mum would often camp out on a bed next to mine and at that time IV treatment home intravenous treatment wasn't very common.  So most of my treatment was in hospital. And my mum sort of, she was a housewife at the time but she had just taken her A-levels. She had planned on a career and she had to sort of put that on hold because she felt that she had to stay at home and give, give me her full care and attention. And so obviously my dad was the main breadwinner and she'd stay at home with me. And you know, she'd have to run me back and forth to the hospital. I mean we were based, we were living in, in [city] at that time and then [city]. And my centre is in between there and obviously she, she had to do a lot of running about going back and forth. 

It wasn't in, the centre wasn't in the city we were living in so it was hard for her in terms of not just physically demanding but it was also cost and things as well. She had to do a lot of running around you know, back and forth every six weeks for appointments and things. You know making sure that all my repeat prescriptions were ordered that you know, they didn't have the repeat prescription service that they have now. And she had to, you know go, make the effort to go to the doctor's and then go to the pharmacist. You know organise all that. At a very, very young age she was only seventeen when she had me so coped extremely well [laugh].

 

Says that it must have been difficult for her younger sister to understand why they were given...

Says that it must have been difficult for her younger sister to understand why they were given...

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And that treatment was. Obviously it was primarily done by my parents and I do think that it was something that they found really hard to adapt to particularly as my mum. I had another sibling who was younger than me and she was non-CF. And she would get very jealous at all the time that was spent with me doing my physio and she. She would get upset when my mum would give me lots of high-fat foods and then she would have to have an apple. Which does seem rather unfair but you know,  trying to explain to a three-year-old and a four-year-old why you're doing that is, is quite hard. And I think it was a really tough time for my mum.

And what about your sister? 

She didn't really help out with treatment to be honest. I think people sometimes imagine that she was very hands on and trying to help with physio and things. My brother when he was born, he's quite a few years younger than me. He actually used to get physically upset when my mum used to do the physio. And she used to tap me on the side and he used to start crying because he thought that she was hitting me [laugh]. And again trying to explain that to a child, 'No I'm not hitting her'. It got to the point where we had to take him out the room. I mean as he got older and he could, he was maybe walking around they would actually encourage him to help my mum do my physiotherapy. But I can remember him being ever so traumatised. He didn't, you know he, he was very much you know, very sensitive to that sort of thing.

And obviously with young children around as well I had a responsibility to make sure that my tablets weren't lying around which. When my brother was born I was about seven years old. And that's quite a big responsibility for somebody of seven, to know to  tidy up after yourself. Make sure that your tablets aren't lying around. And obviously my, my mother was doing exactly the same but boy I'd get into trouble if my, you know, creon was laying around. You know be like, 'Oh he'll have, you know diarrhoea for a week now', you know [laugh]. And obviously you know, you wouldn't wish that on your worst enemy. 

But I do think there was a lot of competition with my sister. It certainly affected her more than my brother. I don't know if even it was the age gap because she was only a year younger and he was quite a bit younger. I think that she, she was constantly competing for attention. And all the time that was spent with me wasn't necessarily attention. It was all CF, CF, CF. 

And I actually felt the other way around. I felt like the only time I ever got attention was for my CF and never for anything else. And she [laugh] was thinking, 'Well she always gets the attention because she's got CF. But in saying that we were very close but so close that we would argue and bicker a lot. And my mum would always say things to my sister like, 'Oh she's very tired. You know she needs to go to bed' and things. And [laugh] when we used, got to the age where we could do the washing up my mum actually used to say, 'Right Lindsay's going to do, go do her physio now [laugh] and you can start on the washing up [name]' you know. So she, my sister was actually in some ways punished for not having CF because to my mum doing my physio she could see that that was a chore for me so she would then send my sister off to do another chore  which would be unfortunately for her washing up. 

So in some ways I felt a bit cheeky like I got out of certain things. And I could, not, not in a manipulative sort of way because I was never that sort of child where I would use my CF to manipulate my parents but certainly my mum quite did that on her own. That she did feel that sometimes I wa
 

When she was younger she felt that nobody would want to marry someone who could die young. She...

When she was younger she felt that nobody would want to marry someone who could die young. She...

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When I was a teenager I'd sort of. I had quite a, you know I had one or two boyfriends. But it was nothing serious. And I never really told them about my CF because it was gross and you know, things about mucus and things. I just sort of kept that side hidden. And I would actually go to the extreme where sometimes if  we went out on a date for a meal I would not take my tablets or I would sneakily take them so that they couldn't see that I had CF. And it was just the whole rigmarole of explaining it to people when you've only just met them. It's not necessarily the first thing you want to tell somebody when you meet them. 'Oh I've got CF'. And you want to get to know them. And I just felt because I was dating and obviously it was, it was nothing serious. I was in my teenage years. I just thought there's not much point and so it wasn't that I kept it hidden from them. It was more that I was just telling a white lie. I was maybe not giving them information and I was not offering that information to them.

But I also once I started to get into more long-term relationships I started to put up a bit of a barrier. I always used to say that I wasn't going to get married and things like that. And it was a barrier because I felt not that nobody deserved me but not. I felt that nobody deserved to be put through falling in love with somebody, marrying them and then for them to die. I just felt that it was, you know, really horrible. And I suppose it was protection for myself because I felt that nobody would want somebody who had a life-threatening condition and that was going to die young. You know, and with all this treatment and things you know I'd go out and I'd be all done up and have all my makeup on. But when I'm ill I [laugh], I look very worse for wear. I'm not particularly anything special if I don't have my slap-on. I look very pale, pasty and coughing and spluttering and there's mucus everywhere and if my bowels are playing up there's all sorts of the things everywhere. And it's really. It's not very sexy. You know you don't want to see, people to see you in a vulnerable state. And so I put this barrier. I said, 'I'm not going to marry anybody' [laugh].

And lo and behold last, well in May time this year I got married at the age of 23 to my boyfriend who I'd been with for six years. He's now my husband. And when I first met him it's quite strange because his niece actually had CF and she'd just been born and had just been diagnosed. And as soon as I told him he said, 'Oh gosh that's, that's wonderful. And I thought, 'Good grief you know, he's a complete nutter,' you know [laugh]. And it turned out that he felt that it was so wonderful because he could take me to his sister and show her that I was happy, I was healthy, I was normal. And that there was no need for her to fret and to be so upset that her newborn baby had CF. He was like saying, 'Look you know she's fine. She's this brilliant person. You know we, we go and do all these things together. She's really fit and healthy. And you know, there's no reason why your child can't be exactly the same.' 

And I think from that moment onwards we had this, this bond where he, he wasn't protective but he helped me out. He understood. It wasn't an issue with my CF and he was great about it. He'd help me with my physio. He'd remind me to take my tablets. We'd make a joke out of my CF. So if I was really, if I'd just suddenly cough at him and there'd be, you know, mucus on his face because I'd not covered my mouth. He would actually think it was completely hilarious. And I think when you feel, when you find that somebody special you feel so comfortable with them that it doesn't matter what you look like or, you know, if you've got a snotty nose or you're coughing all over or you've got no make-up on. It doesn't matter be
 

Felt that previous boyfriends were a bit negative about her CF but her husband - who has a niece...

Felt that previous boyfriends were a bit negative about her CF but her husband - who has a niece...

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There'll be some, you know, there were some people that knew about my CF some boyfriends that were maybe a bit negative. I mean they didn't reject me because of my CF but you know they didn't take an interest. They weren't really bothered. But as soon as I met my husband I knew that he was the one because he, he really had an interest in my CF and he accepted that it was a part of me. And he wasn't going to ignore it. And that was great in a way because he wasn't making a big deal out of it. He wasn't patronising. He wasn't like, 'Are you ok?' every five minutes but at the same time he was there when I needed him. And when I was in hospital and moping around and feeling sorry for myself he'd say, 'Oi you know, cheer up. You know stop moping around it's not the end of the world'. And it's really great to be able to find somebody like that that understands you.

I don't know whether or not having a niece with CF helped. I think that I was very open and honest with him right from the beginning. I mean I was so worried about his reaction. We'd only been dating a few months when I told him but it turned out to be the best decision I'd ever made. But I think it's down to each individual and you've got to judge whether or not the time is right. There might be some boyfriends or girlfriend's that you know that the relationship isn't going anywhere. And that it's not really worth, you know, giving them your life story. You don't have to feel obliged to tell anybody about your CF. But I do think that if you are in a relationship for the long run it's best to be as open and honest as possible if you can see potential in that relationship. You know, and base that relationship on trust and being able to share things that you wouldn't share with anyone else with that person.

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