Elizabeth - Interview 01

Age at interview: 22

Age at diagnosis: 16

Brief Outline: Elizabeth was diagnosed with scoliosis at the age of 16. She now works for a Department of Health funded project. She says that as a teenager she 'rebelled' against her condition and stopped taking her painkillers. Her attitude now is to work with her condition rather than against it. She takes regular exercise and does a lot of walking.

Background: Elizabeth lives at home with her family - mum, dad and younger sister plus two cats. Ethnic background/nationality' White British. At university she applied for Disabled Student Allowance and says it's the best thing you could do.

More about me...

Elizabeth lives at home with her family- mum, dad and younger sister plus two cats. She was diagnosed with scoliosis at the age of 16 and was told that many people have this condition so she thought nothing of it. Her consultant sent her for a course of physiotherapy and for the next two years she was fine with it. At the age of 18 she began to experience gripping pain in the top of her shoulder blades. She was sent for more physiotherapy and later discharged but she was still in great pain. Her condition was aggravated when she fell and slipped a disc in her back. She began to experience intense pain in her right leg. She was out off work for a month while recuperating. 

The combination of scoliosis and a slipped disc made the everyday managing of her condition(s) difficult. She started to see a private physiotherapist who taught her how to control things for herself. Nowadays her physiotherapist gives her options and encourages her to make her own decisions.

For the past three years she has had regular check-ups and X-rays. Very recently she found out that she needs to have a spinal fusion. This surgery entails an incision in her back and small metal rods will be placed in her spine to try and straighten it out. There is a need for surgery because the curve in her spine is still increasing.

In the past she has experienced problems in her work place from colleagues and bosses who do not understand her condition and her need to take regular 'standing-up' breaks. She has found that local government and the NHS are the best employers.

Regarding friends and boyfriends - her attitude is to be honest and tell them about her condition. She thinks that it is very important to make those around her understand that sometimes pain flares up, meaning she has had to cancel arrangements at the last minute. When she was a teenager she found it difficult to talk about her condition with her peers at school.

She now feels more in control because she knows how to manage her condition. Plus her attitude has changed and she says that she works with her scoliosis rather than against it.

She works for the NHS as part of the Expert Patient Programme and in her post has had a chance to learn more about her own condition. 

She sees her parents as very caring but not overprotective because they leave her to get on with her life and make her own decisions and sometimes mistakes.

Explains what happens at Expert Patient Programme workshops for young people.

The Expert Patients Programme, it works with people with long-term health conditions. So that can be any long-term health conditions. Diabetes, arthritis, blood pressure, people like me with scoliosis, epilepsy, depression, other long-term mental health conditions. So any long-term health condition we work with. And we run like self-care programmes. So it's just really like courses to help you live day in and day out with your condition. And we're not like medical people, we're not doctors, we're not nurses. It's more about lifestyle, how to communicate with people, how to overcome any problems that you may have. So we look at things like relationships with your friends. We look at problems that you may have experienced, like problems with your family, problems with school. But we don't just look at problems. We look at like things that you can do about it. But it's not like being at, at school, or it's not like being in a lecture. It's really quite active. Everybody participates, everybody gives ideas. If you come up with an idea that's not, not, that is quite unusual, nobody says, 'Oh, that's a wrong idea. You shouldn't do that'. Everyone's quite open to hearing new stuff as well. And it's just nice really, because people listen to what you've got to say. 

And the people you provide this training there are between the ages of 12 and 18? 

12 to 18, yes. And the people who stand at the front, they've all got long-term conditions themselves. So we understand what people are going through, and we've been there. So we know, when we say we understand, we really really do understand, because we have been there. And it's not about talking about your condition all the time. Okay, it's, you may have a condition, but you still have a social life, you've still got your education, you've still got your friends. So it's looking at those aspects of your life rather than looking so much at your condition. And just ways that you can fit those things around your condition.  

Also that, I'll say about the, when you're actually on the day as well we do like other activities. So it's not just like your condition. We do like a little bit of acting in there. We do sort of like sessions at the end. So we do, we've had like, like a hip-hop artist and we've had making a music video. We've had like art sessions, we've had like music workshops. So it's not just about your condition. It's about doing other stuff that's not really related to your condition. Because really you're a person, you're not your condition. It's like, 'I'm Elizabeth with scoliosis. I'm not that patient with scoliosis'. It's an awful thing to say. So it's just recognising that, you know, you have got a condition, but you've still got to live your life, otherwise you're going to be boring.

She went through a phase of not wanting to take painkillers for her scoliosis but found the pain...

I went through like a stage of just really being annoyed. I just thought, 'Oh, why have I got this? This is so unfair. What have I done to have this? Why do I have to take my tablets? Why do I have to take my painkillers?' And I went through a stage where I wouldn't take no tablets at all. I wouldn't take no painkillers, I wouldn't take any pain relief. I wouldn't do my exercises. I just thought, 'No, if I don't do it, it will just go away'. And when I actually did start taking my tablets regularly again I did realise what a difference that it actually made. And I just thought, 'Why was I such an idiot? Why did I stop taking them all?' But I thought, 'Well, if I'm not taking the tablets, then it won't exist and it will go away'.

How old were you when you stopped?

I think I was about 18 I think. You know, I didn't take my tablets for months. I just wouldn't take them. And it was only when I went, I finally, I went to the doctor's and said, 'Oh, I'm in so much pain. I can't cope no more'. And I really did get depressed. I was really really low. And they said, 'Well, take your painkillers'. I said, 'I'm not taking painkillers for the rest of my life'. And she went, 'Why?' And, 'Well, because I don't want to take them'. And she went, 'Why don't you want to take them?' She went, 'For God's sake, it's one tablet. Take it'. And she just, it was just like her bashing my head against something. She just, I don't know, she just really sort of knocked it home that, 'You have to take your tablets. And just because, just because you take tablets it doesn't mean you're a bad person. It doesn't mean that you're not coping'. Because that's what I felt as well, 'If I'm having to take painkillers I'm not coping'. I just had to have a bit of a stern talking-to in the end.

She says that pacing and accepting her condition and limitations have helped her cope better with...

I'm quite strict on my sleeping patterns. Because there's one medication I take in the evening, it makes me slightly drowsy. So I always take that at 8.30 and I always aim to be in bed at 10.30. Because I've found that if I'm tired I tend to feel more pain. And then when I'm in pain I tend to feel tired. So I'm quite strict on my sleeping. I'll get into bed, I usually drop off at about 11 and I wake up about half past six. Because if I sleep for too long, that triggers a flare-up as well, because I'm in the same position for too long. So like fatigue and my sleeping patterns, it's really quite closely related to my pain as well.

I'm coping with it quite well. You know, I tend, instead of like fighting against it, like before if I had a flare-up I'd try and go out for a run, but now I tend to work with it. I've sort of stopped thinking, 'Oh, this is a really bad thing'. Because it's not. It's just something you live with. I don't, I try not to let it impact. I know it is very difficult. It's okay for me to sit here and say, 'Oh, yes, my life is perfect'. I know it's far from that at times. But I try and make the best of it now.

Let's talk about manage, managing your condition. You said that in the last couple of years you think you have learned a lot. Can you tell me a little bit more about that?

Yes, I've learnt not to push myself so hard, you know. I've accepted more. I think with time I've accepted, 'Look, you've got scoliosis. You can either make the best of it or just stay at home and stay in bed all the time'. It's like when I said before, when I'd rather stay at home and watch a movie with someone rather than totally cancel the plans of seeing them. It's just, it's about being good to yourself and meeting yourself half, halfway. And don't be so harsh. Because I used to, if I used to take a day off sick at university, I mean I used to torture myself. I used to do things like, 'You're never going to pass now. You're going to miss so much work' When it wasn't. My mates used to bring my work round in the evening to me, and I used to catch up then. Or my tutor used to email me with work. So I never really used to lose a lot.

But you felt bad?

Yes, I did, I did. I really did feel bad. But...

Because you were failing others?

Yes. And I thought I was failing myself too. Because where I hadn't accepted that I had this condition, I thought, 'Oh, you're being lazy, Elizabeth. For God's sake, get out of bed'. And I used to push myself really too hard. And in the long run I was doing myself a lot more damage. Because rather than like stepping things down a little bit, I'd keep it at the same level, and it would take my body a lot longer to recuperate.

So one of the key is to accept your condition?

Yes. And it's pacing as well. Do what you can, not what you think you should be able to, not what your friends tell you you should be able to, and sometimes not even what your physio tells you you should be able to, or your doctor. Because sometimes they only see you at certain points of your condition. They're not with you day in and, and day out. So do what you can really.
 

She goes regularly to the gym and does at least 40 minutes walk everyday but says that she is...

I do lots of walking. Because I didn't really think walking was exercise before, so I never used to do it really. But someone said to me, 'Oh, no, walking is a very good exercise'. So I walk to the station in the morning. So that's about a 20-minute walk in the morning. And I do the 20-minute walk home in the evening. I try and get to the gym, well, usually it's about two to three times a week. And I use the cycle. Which is good because it's low impact. So I can sit down and I can put myself in a nice position and I can ensure all my spine is straight, as straight as it can be, when I'm sitting down. I've also got a big, like a big Swiss ball and sometimes I just lay over that and do stretches while I'm watching the television. So it's not, it, although I do do exercise it's not quite, like I don't go to the gym every waking hour. I just sort of fit it in. So I might do a bit when I'm watching telly or I might get off a bus stop a bit earlier. So I just try and fit it in where I can.

And what about swimming?

I don't really like swimming because I, well, I enjoy the actual movement of swimming, I like the, the action of it, but I'm quite self-conscious because of like my shoulders are different heights. And when I've got a swimming costume on it's really noticeable that I've got scoliosis. And I'm quite, I don't really feel comfortable swimming.

So you're self-confident? You're sort of self-conscious?

Very conscious of it, very. I will go swimming in the sea. But it's a very rare occasion, I don't like going to the swimming pool.
 

Has a diet that is rich in calcium to help keep her bones healthy. Is careful about her calorie...

In which way  do you think a good healthy diet will benefit you?

Well, I make sure, well, for my own, because it's, like with my bones, I make sure I eat enough calcium. If I put too much weight on, it does put a lot of pressure on the spine as well. So I have to keep an eye on that. Not too many take-outs. But I mean my diet is far from perfect. I must try harder on my diet. But I, if I eat a chocolate bar, I'll eat an orange, and I'll try and tell myself that, 'That's okay. I have eaten an orange'. But, yes, I mean I'm not perfect. I'm far from perfect, but I do try.

It would have been helpful to see the same consultant when she went to the hospital. She should...

What support you needed?

I just needed someone to tell me that it wasn't in my head and it was actually real. Because I was made to feel a bit of a fraud and a liar. Because I was saying that, 'I've got all this pain'. And they said, 'Well, no. You haven't got that much pain'. I said, 'No. I really have'. And one doctor told me if I did some exercise my spine would straighten up fine. So that was, it's not so much an issue now, healthcare, because I'm really lucky, I've got a really good set of doctors. I've got a good GP and I'm at a good GP practice overall. So they're very helpful when you ring them up over the telephone. And I've got like, I've got an understanding now with the hospital as well. And, but I think also the problems with the healthcare, it was partly my fault and it was partly the doctors' fault as well. It was partly my fault for them saying, it was, let me start again, it was my fault for thinking that they could just make everything better, they could just perhaps do an operation on me and it would all be fine. And I also think it was partly the doctors' responsibility that I would, they never actually sat down and said to me, 'You know, this is something that you've got to learn to live with'. Rather than just X-raying me and saying, 'Right, we'll see you in the next six months, we'll see you in the next six months'. So everything was always the next six months. And I was expecting the next six months for them to tell me, 'Oh, we're going to do this and make you better'. So that was, healthcare was a big issue for me.

So that was your expectation. And in, in which ways were they failing?

I never got to see the same doctor twice. I always saw a different doctor. And it was like little things, it was, I used to go in there and the seating is absolutely appalling in hospital. So bearing in mind I'm there for a back pain clinic, and then they make you wait for three hours on the most uncomfortable seat ever. And then I'm not exactly in a good mood when I get in there. It's just little things like that. And it's like when I ring up for an appointment. Like, because I had an appointment a few weeks ago, and two weeks before I tried to cancel it and rebook it. And they said, 'No, we're not booking any more appointments'. I couldn't get another appointment for a year. So it's quite difficult when you're planning holidays and, and things like that. So I think if I'd had a bit more information, like when they make an appointment to say to me, you know, 'The clinics are really booked up. You're not going to be able to change this appointment. So please plan your life and your holidays around this appointment'. I mean it doesn't take long to, to say that. It takes not even a minute. I think that really would have helped as well.

It's like, take the instance, last time I went to clinic a few weeks ago, they'd lost my previous set of X-rays. And because I hadn't seen the same doctor before, they couldn't exactly remember what the X-rays were like before. And it's things like, because when they measure the curve it's quite subjective, because it's down to the individual. And if you've got like five different people each time measuring the curve, all the measurements are going to be different. So one might say it's got worse, the other one might say it gets better, and then it doesn't continue. It makes me laugh sometimes, because I have to laugh about it.

Have you told them about this? 

Yes, yes. But I've got, finally now I'm having my surgery I'm being referred to [hospital] Hospital. And it's up in [city]. It's quite far from where I live. But I've got a feeling things are going to be a lot better now.

Says that doctor's language is 'over the top' and thinks that some can be insensitive and...

And what about the language they use to talk to you, explain things to you  in the hospital?

Really over the top. They use lots of long words. I'm quite lucky because when I done my degree I did like psychopharmacology, and when they talk about medicines I understand it. And they talked like, I said, 'Well'. And they, they gave me one medication that was making me really drowsy. I think I said something, 'Oh, yes, it's the way it's interacting with the histamine receptors, isn't it?' You should have seen their mouth drop. It like fell to the floor. But, yes, I do think the language they use is over the top. I do feel that sometimes they should simplify things. And I do feel as well that they're really quite impersonal. Because, especially because I was waiting in the consulting room and they was talking about me outside the curtain. And I just think that's very very rude, to talk about someone and they can hear you talking about them. And I mean just because it's in a medical setting, I mean manners cost nothing. No, I think it's very very rude.

And you were not part of the team sort of speak?

No, not with the hospital. With my GPs, definitely. Because they're so supportive, like my GP. And even though my physio, he is a BUPA physio, they, they talk to each other as well. It's really really really good. But I've never really felt that when I get into the hospital. That sort of gets a bit lost because it's so busy, there are so many people in there that need help. And I understand they're just trying to quicken things up by talking to each other out there. But that still doesn't make me feel any better. So I can see why they do it, but it doesn't make me feel any better.

She is 22 years old and finds it useful to take her parents along to the consultation because she...

Definitely, definitely. And also it might be nice like at the end just, what I do now is, I repeat back what I've heard. So if they say to me, 'You're going to get an appointment through in three months' time. We need you to attend this and bring your X-rays'. And so I'll repeat that and say, 'Right, so you need me to attend this appointment in three months' time. Are you going to send this to me? Do I need to ring you up and request this appointment? And what do I do if the appointment doesn't arrive?' So I repeat back. And I always take someone with me as well. I take, the only people I trust to go is either my mum or my dad. And at the age of 22 I still take my parents to hospital appointments, because it's useful having another set of ears there. And they can ask questions that I don't think of. And say if I get something that I wasn't expecting, I'm usually in a bit of, like last time I was in a bit of a shock. And they was asking questions. And as I came out of the consultation I was thinking, 'Oh, why didn't I ask this? Why didn't I ask that?' And I asked my dad. But he'd asked the questions for me. But I didn't realise what was going on because I was a bit shocked.
 

She feel very well supported by her GP but receptionists can be a problem when she needs to see...

You have a good support system there.

I mean my GPs are fantastic. I mean I'm so so lucky. Because there's two at the practice, and they're a husband-and-wife team. And if I can't see one, I can always go and see the other. So they're both involved in helping me. And my parents as well, they're really, they're really really supportive.

So it seems to me that when it comes to your GP you can, you have a good relationship.

Very very good.

In the doctor's surgeries in particular. You'd ring up, I mean in one of my previous doctor's surgeries, it wasn't a very good one. I mean a very very large practice, very very large population. And I used to say, 'Look, I really need to, to see someone. You know, I'm really quite in a lot of pain'. And they said, 'Okay, a week, and, and you can come in, in a week's time'. And I said, 'Well, I really do need to see, to see someone. Or can, can I speak to someone on the phone?' 'No, the doctor doesn't take no calls'. I said, 'But, you know, I really can't wait that long'. And because I've had that situation, I've ended up in Casualty. Because I've been in such an amount of pain and I can't communicate with the receptionist that I need to speak to someone like quite urgently. And I know I'm wasting people's time in Casualty. But it's because I've had no other option. And it has been a problem in the past.

What I'd do is, I have  rang back and spoke to a different receptionist. I've done that quite a few times. I've also discovered as well that there's an NHS walk-in centre and you can have access to, if you're really having that much difficulty getting a GP's appointment at your practice, you can go to the walk-in centre. You wait, you may have to wait a bit, but you can have access to a GP. Also I've, sometimes I've spoken to my GP and explained to him that is it possible like to communicate to the receptionist when I call, 'You know, I'm not a time-waster. If I'm calling it's because it's a very unusual situation and I do really need some help'? So I've done that in the past as well, and that seems to have helped.

So the doctor has spoken to them?

Yes. And also I don't get angry and I don't have a strop on the phone, because that's the worst thing you could do. If, I mean before I've said, 'Look, I, I need to see someone now' and I've got quite stroppy and I've got quite rude. And if you're rude to someone on the phone, and then they don't care. They just think, 'Oh, well, they're just kicking off. They don't really need to see a GP'. So be persistent, but be persistent in a polite way.

Her scoliosis affects her social life because she often can't do the things her friends are doing...

So apart from affecting your work, your daily activity and affecting your sleep, what other areas of your life does this flare-up of pain and fatigue affect?

My social life really, because I don't really feel like going out. I mean sometimes I do feel better if I'm having a flare-up and I go out, but sometimes it can work the opposite way. If I'm out with my friends and they're dancing and I'm stuck standing really still or I'm sitting down, I just don't feel very good about myself. And it's like I'm almost jealous really, because they're up there dancing and doing things that I can't. And I feel a lot worse. So social life it does have a real impact on.

So therefore you can't be taking part in activities that young that your friends are.

No. And, simple things like shopping as well. If I'm having a really bad flare-up I can't really carry shopping bags. So say if I've bought, I don't know, a pair of, two pairs of jeans and a pair of shoes, there's no way I can carry all that when I'm having a flare-up. Even simple things like going to the supermarket and getting some bread and milk, I always like, I'll use a trolley so I don't have to carry it. And luckily enough I'm able to drive, so I move them from the trolley into the car. And also that's less lifting when I get home. And my family are very good, they'll come and get the bags out of the boot for me.

She's had problems with her friends because she's not always able to go out. Thinks it's good for friends to see her when she's not feeling her best so they understand.

And also this applies to friends and peer groups?

I've had problems with my friends, because it's difficult going out like clubbing all night. Because physically I can't, I can't do it. And if you're in a crowded bar and I need to, because I need to alternate, I need to sit down and I need to stand up. And if you can't get a seat at the bar it's quite, it's quite difficult. Sometimes I have to go home h-, early as well. So they may stay out till about 3 o'clock in the morning. I mean I'm on the bus home by 12 o'clock. I can't really do all night. And it, again it's just explaining to people that, 'It's not because I don't like you and it's not because I don't want to be friends with you'.  But also with one particular friend, I did have a lot of problems with him. Because he used, he said, 'Oh, you never come out. You're boring. You're no fun'. Because he's got a condition similar to mine, but it's nowhere near the same severity. And because he can do all these things, he thought that I can do all these things and I'm just, I just don't, I'm just not interested in him. But I think sometimes if you actually let s-, let people see you when you're not good. And I think when he saw me once and my walking was really really bad and he had to help me walk along the street, ever since then he's been a lot lot better with it. And as hard as it is to let people see you when you're ill, you sometimes, you know, you've got to, you've got to do it.
 

She has a few ideas about how schools could help young people with chronic conditions not to miss...

There should be like policies in place for I mean working with students with long-term conditions. There should be like a criteria of things that should be available to them. So like, sort of like a minimum standard. So for example a minimum standard could be, if a student is off for a day, a minimum standard is that they can be, expect to be sent at least two pieces of work by email so they can catch up, so they're not so far behind when they get back. Or it could be to post work out. But do it without constantly being asked to do it. Because I found that I really had to ask this teacher, ask that teacher for work. And it gets quite on top of you. Because you always forget to ask someone for a piece of work. And then you fall behind just because you forget to ask someone for something. 

And also perhaps have someone that they can talk to, but not necessarily a teacher. Because you don't really want to tell things about your long-term condition about your teachers. Perhaps someone like as a go-between. Perhaps it could be someone who's like an older student. Perhaps not at the school, because you don't really want your business all going round the school. So perhaps someone who's, I don't know, is at a college or at a different school. And someone who's slightly older as well. So they, when they're conversing with teachers, they respect them a lot more and they listen to them as well.

What about asking a nurse to go and talk to someone at the school?

Yes, that would definitely be a good idea. Because they're, like if a person is a nurse, they've got a lot of authority as well because they've got a lot of knowledge, a lot of experience, a lot of training. So that would be a very good thing.

Her physical symptoms gradually got worse from sixth form to university. She found it hard to...

Yes, I was, my scolio, I went to sixth form and I went to university. So my scoliosis, it didn't really affect sixth form that much, because that's when it was really starting to progress. I had a few aches and pains and I used to fidget a lot in class. And I used to be quite noisy because I was constantly fidgeting. And the teachers used to, shot me like dirty looks. But at university it did create a problem. Because the lectures, they were like two, three hours long. And sitting that long, I just couldn't do it. So they had an Access Unit. It was for people, sorry, I've lost my words here, I can't remember what the abbreviation is it, it's for. But it's an, it's an Access Unit and they help people in university. And I wasn't, I didn't, because I didn't really see myself as having like a disability. I just thought, 'Oh, I was just Elizabeth and I had a bit of scoliosis'. And they encouraged me to apply for Disabled Students' Allowance. And I was quite a bit put off, because I thought, 'Disabled? I'm not in a wheelchair. You know, all right, I can't walk sometimes, but I can walk most of the times'. But I think it was coming, I think applying for the Disabled Students' Allowance, it was the best thing I ever did. Because I got specialist seating. I got a seat insert that I could sit in my lectures. And the lecturers, they were a lot more understanding. I used to get up and take a break. They was fine. They provided a dictaphone as well. So if I had to pop out for a few minutes to have a stretch, they used to record the lectures. So that was no problem. I used to get extra exam time. So I could get up and have a stretch and it wouldn't impact on my work. Which was, it was just such a relief. Because I did my first set of exams when I was there with none of the extra time. And I used to come out, I used to be really in a lot of pain and it used to take me about two or three days to get over it. And my university, they also paid for me to have a computer at home. And they paid for specialist seating at home, so I could work comfortably. So I didn't have to worry about being in the computer room. So I didn't have to worry about having to get up and leave my work and coming back to it. So I could do it all indoors. And they used to pay for photocopying allowance, so I didn't have to take the whole book home. And I used to get an Internet allowance, so I could access on, the journals online. So I didn't have to go into the library at university. But they was just brilliant. I couldn't have asked for more really.

And you had this allowance for the three years?

Yes, for the three years. You get the computer and you can keep it. It's yours for ever. Because they said it's more hassle to come back and pick it up and clean it and strip it, and by the time the three years are up it's not a new computer.

And how do you apply? Do you apply through the university?

Yes. They, they did all the forms for me. All I needed was a letter from my doctor. And I gave it to the Access Unit and they took it from there really. I had an assessment. I had a consultant, I think he was something to do with Occupational Health, I wasn't too sure. He came in and he spoke through, we talked through about my everyday life really, the problems I'm having. And he, he made up recommendations and they sent it to my local authority. And they, they delivered all the equipment to my house. So it was, it was really easy. It was an easy process. I don't know why I didn't do it before. I just think I was so big-headed. I just didn't want to accept the help, because I was so used to coping and being quite independent. And I think I felt such a stigma attached to it, being Disabled Students' Allowance as well. But it, the best thing I've ever done. I'd recommend it to anyon

She describes how in a previous job her colleagues had been unsupportive and had made unhelpful...

I had a job between the ages when I was 17 up to about 20. And it was very difficult in that workplace, because when I used to call in sick it was, 'Oh, Elizabeth's off sick again'. My colleagues, they used to be sometimes not that understanding, and I didn't have specialist seating there. And in the end it came to a situation where my doctor signed me off of work, and he said I wasn't to return to work until I had specialist seating put in place. Because they wasn't very long-term condition friendly. And there was one incident where I did go into work and I had to drop my sick certificates off. And my colleagues, they was like, 'Well, if you're off sick, how come you can walk and drop these certificates into work?' But what they didn't realise, they didn't bother to ask, that I had a physiotherapy appointment which was one minute away from my workplace. So they never bothered to ask a few more questions. And it was quite difficult there though, it was really difficult.

And if I had, because it was working with the public and I used to have to sit down for very long periods, like up to an hour at a time. And I was dealing with customers and I couldn't just stand up and, I know I couldn't just stand up and walk away. But I don't see what the harm is me standing up and saying to my customer, 'Would you like me to get you a cup of tea?' So it looks like I'm being helpful to them and yet I'm also getting a standing-up break. But they wasn't very, they didn't really take that idea very well. Because they thought, 'No, if you're with the customer, your total time's devoted to them' considering, not taking into consideration how much pain I was in. And probably my work was affected, because I just wanted to get the customers out as quickly as possible. Because I was in pain and I wanted to stand up and go and have a stretch.
 

She has scoliosis and says that what worked best for her was to look for flexible hours or jobs...

I worked in part-time employment after that and it was a lot better, a lot lot better, with standing-up breaks. They was fine with that. And if I wanted to go out and have a walk, it wasn't, it wasn't an issue. I think because it was like, it was like local government, so the culture there was a lot better for helping people with long-term conditions.

Local government?

Yes.

What did they provide? In, in which way did they help you?

It was really my working arrangements. Because I did, I was, I originally did two, two days a week. And I had a bit of a flare-up, I had a really quite serious flare-up. I was off of work for two weeks. And when I came back to work they let me mess about with my hours. So sometimes I'd do, the two days a week, I'd spread it over four mornings a week, or I'd come in at 9 and go home at 2. I used to do however many hours I could manage that day, as long as it added up to my two days at the end of the week. And they was very very flexible. And if I, say I was booked to come in on a Tuesday, if I rang up and I couldn't manage it, it was okay to come in on a Wednesday if I really needed to.

It's really finding an employer that's friendly to people with long-term conditions. Over the past I've found that local government are quite, are very very good. They've got lots of policies in place. The NHS as well are a fabulous employer to work for. Because they deal in health, so they understand about the problems of having a health condition. And also perhaps like do a bit, before you apply a job, do a bit of research into the company. Look on their website. Not necessarily their website as well. Look at what other websites have said about them too. Because I know when I applied for my job, I did a lot of research on the com-, because it's the Expert Patients Programme, it's part of the NHS, so I did a lot of research on the Expert Patients Programme website. And I looked at some other information on the Internet too. And I also in my job interview as well I explained about my condition. I was totally honest on my application form as well. Because I think that's so important. Because how can your employer help you if they don't know about your condition? And also perhaps someone who offers flexible working as well. It's just so that you haven't got a really bad sick record. Because that's what I always worry about, having a really bad sick record. And it's quite daunting when you're going from education to work. Because if you take a day off sick at school or at college, it doesn't really matter, it just goes down on your attendance record. But on when you're actually being paid to do something, it's a lot different if you take a day off, day off sick.

Sometimes I work from home. If my walking's bad, I'll ring up my boss. And she said, 'That's fine, to work from home'. There's no, no problem with that at all because our email, it's a bit like Hotmail, so you can access some of it on the Internet. And I've got a memory stick and what I do is I always back up work on it before I go home that evening. So just in case I have an unexpected flare-up in the morning, I've always got work on the stick to do. They also, if my walking's bad, they will pay for cabs as well if I'm going to a place that involves a lot of walking. And they're very good like that as well.
 

Says that her mum worries about her because she's a mum but that she also knows when to back off.

Yes, yes. My mum worries about me even now. She'll always worry about me because she's my mum. She'll never stop being my mum. But, yes, she does worry. She, you know, she'll, in the morning, if my walking's really bad, she'll say, 'Do you really need to go to work today?' And she'll say, 'What are you going to do when you go to work today?' And sometimes like if I'm not feeling very well at work I'll actually phone my mum. And, yes, they've always worried about me, even when I was in like sixth form. When I was in university, they did, did worry about me then as well. Because they used to ask what lectures have I got? Will I be all right getting home? If I'm going to the library, give them a ring. And sometimes you need to take about ten books there sometimes. I mean I could never carry ten books. So they do worry. But I know they only do it because they care.

Do you think that at some stages they might be more overprotective or, towards you than your sister? Or just the caring?

No, I don't think they do actually. Because it's nice to know that they're there if I need them. But I've never really felt really smothered by them, or I've never thought that I didn't want them there. You know, I think it's because they, they let me get on with things to a certain extent, they'll let me deal, deal with things. And when things get too far then they'll step in and they'll say, 'Right, you're not going out today'. I can understand why they do it. I know sometimes I don't like being told, 'Well, go and have a bath because your walking's bad'. But they do it because they care.