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Lizzie

Age at interview: 25
Brief Outline: Lizzie is married, a university graduate with an English degree. Lizzie was born with a unilateral cleft lip and palate which was not diagnosed prior to her birth. At the time of interview she was working in a call centre and enjoys singing in a choir in her spare time.
Background: Lizzie is White British and a university graduate. She is married and is currently working in call centre. Lizzie was born with a unilateral cleft lip and palate. She has a younger brother.

More about me...

Lizzie is a university graduate with an English degree. At the time of the interview she was working in a call centre and she enjoys singing in a choir in her spare time. Lizzie was born with a unilateral cleft lip and palate which was not diagnosed prior to her birth. This was a great shock for her mother who was left searching for answers as to the cause and implications of her daughters’ cleft. 

Lizzie’s parents consulted her about her education and together made a decision for her to attend an all girls’ boarding school. Lizzie’s schooling was mainly a positive experience and she achieved well, although she was subjected to bullying and teasing from other girls and comments were also made by some other parents. However, Lizzie believes that having been born with a cleft lip and palate and her school experience has helped shape her personality and the person she is today. She has also been influenced by the drive and determination of her parents, particularly her father, by not letting her cleft beat her. 

Lizzie has received extensive surgical intervention throughout her childhood and young adulthood, including lip repair, palate repair and rhinoplasty and has been involved in the treatment decisions. Fortunately, Lizzie has not experienced any speech and hearing issues as a result of having a cleft and its treatment. 

By undergoing counselling Lizzie has been able to put a lot of her early negative experiences relating to her cleft behind her. She has also had a lot of support from her fiancé who has helped to raise her self-esteem and confidence. More recently Lizzie has got involved with CLAPA Adult Voices and is helping to inspire other young adults and families affected by cleft lip and /or palate and, through her own experiences, demonstrating that difficulties can be overcome.
 

Lizzie recalls how she needed to wear braces as a child and how the treatment progressed with bone grafts to improve growth of teeth.

Lizzie recalls how she needed to wear braces as a child and how the treatment progressed with bone grafts to improve growth of teeth.

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The... first treatment I remember, I remember sort of getting braces and everything like that from about age 7. I had quite a lot, I had, you know, train tracks and... retainers and everything like that to sort of even up your teeth. The first... the first operation that I remember was just having a few teeth removed when I was about... I think I must have been about 7 or 8.

OK.

And then it sort of went on to, you know, jaw ups and, you know, most surgeries that most people with clefts will have.

So did you have treatment throughout your teenage years as well or?

Yeah I mean it was mainly I had quite a long break between my first bone graft operation when I was about 10 or 11 and then it wasn’t until I was about... 17 that I had my last, that I had my next op. Which... I still had treatment in-between in the fact that I was an outpatient at [hospital name]. 

So I imagine you had regular check-ups and monitoring of teeth and such?

Yeah, yeah and my surgeon just wanted to sort of see how I was doing, how I was progressing and you know, what the next bout of surgery would be.
 

Lizzie discovered she could be more involved in making decisions about treatments as an adult. However, it was still emotionally challenging to receive appearance altering surgery as a young adult.

Lizzie discovered she could be more involved in making decisions about treatments as an adult. However, it was still emotionally challenging to receive appearance altering surgery as a young adult.

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They always sort of said, “Right, this is what we want to do. This is how we’re going to do it. And these are the results that we were expecting.” So they’ve always been very, very good at setting out what they want to do and how it could help, you know, throughout your life, and also with... your appearance. So they’ve always been very, very, you know, throughout my treatment I can always say that I knew exactly what was going to happen. Possibly wasn’t prepared for some of the pain but, you know, they were, they, I always knew, you know, that my next operation was going to be this and that they were going to do this, that and the other. So I always knew what was going to happen.

Yeah hmm.

And there was one, it was... my... I think it was my first or second nose job, or rhinoplasty or whatever you want to call it, and they had a guest surgeon.

A guest?

A guest surgeon in, who suggested that they do something about my cleft lip scar to sort of, you know, just to improve the appearance of it.

So this was something a bit ad hoc, would you say, was it?

Yeah it was the day before I was supposed to have my surgery.

Oh right OK, not a lot of time to psychologically prepare for that.

Well I sort of said, “OK right, what, you know, what do you think you can do for my scar?” Because I hadn’t sort of seen it. And they said, “Well we think we can just make it a little bit less noticeable.” And I thought, “Hmm OK well... alright, whatever you think you can do to sort of, you know, make it less noticeable. Because that’s always been something... that, when I look in the mirror, I do see the scar, and if you can make it a little bit less noticeable then, then fine.” You know, and... I’m glad that I got it done. Because they did actually say, he did actually say that it wouldn’t be a sort of, you know, it wouldn’t be major surgery, it would just be something that they would do alongside the rhinoplasty. And I’m really glad I got it done.

OK.

Really glad I got it done, because that definitely made it... just... it’s probably not the best word to describe it, but tidier.

And when you get used to seeing yourself over the years, how do you adapt to the change, how is that adaption, is it an adaptive process or is it something which you can immediately accept?

It does take a bit of getting used to, especially if it’s major surgery like if you’ve had like, I mean I had surgery done on my jaw…

Right.

…whereby they surgically broke it, moved it forward and down. And that changed my appearance radically, in a good way, but that took a lot of getting used to.

You know, the fact that I had an over by, and the fact that, you know, all of a sudden my face didn’t, you know, my face was sort of more pronounced, it wasn’t sort of quite so... flat almost, that took a lot of getting used to. And... of course my nose operations, that took a lot of getting used to, because all of a sudden my nose didn’t dip down, it, you know, stuck out like it .. like everyone else’s did. That took a lot of getting used to.

Yeah.

But the one thing which... I really had a thing about was my gap in my gum where I didn’t have a tooth. I had my implant and a crown and they said, “OK well, you know, have a look at it.” So I smiled, I took one look at my smile, and I burst into tears because, you know, that was something that I’d always been very self-conscious about, the fact that I had a gap where a tooth should be.

OK.

I always wanted a full grin, and that took, that... probably affected me more than anything else, was that gap.

So it might not be the most obvious things which affect you the most?

Absolutely. I mean the big things do affect you but, you know, I was sort of... I knew that they were going to affect the way that I looked radically so, you know, it wasn’t a surprise when they did. But something so simple as just, you know, a false tooth, you know, all of a sudden I could grin and not sort of think, “Oh I’ve got a gap where a tooth should be.”
 

Lizzie was not aware of her visible difference until she went to school and this experience has helped to shape her character and her self-determination to succeed in life.

Lizzie was not aware of her visible difference until she went to school and this experience has helped to shape her character and her self-determination to succeed in life.

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I don’t actually recollect much about, you know, being made aware that I was different until I actually went to school.

I started, you know, at about age 4. And... I remember little comments from the other kids. Kids are naturally quite curious: if they see something different they want to know.

Yeah sure.

And my mum remembers after the first day, my first day of school coming back and I said, “Mummy, what’s wrong with my face?” And that was her first sort of experience of what was... to come basically, all the questions and everything like that. And it sort of snowballed from there. I mean my school years were... bit of a roller-coaster. Of course kids can be very cruel, especially when they don’t understand what, you know, what they don’t, you know, with something different they don’t understand it and they can be very, very cruel. So, yeah, I got bullied, I got teased. But that kind of spiralled spurred me on to... basically be the person that I am today, you know, I am very determined, and if someone says, “You can’t do this because of this, that and the other,” I try and set out to prove that I can.

OK.

So it’s made me the person I am.

OK so you fought back in your own way or?

Yeah I think that, I think my parents definitely helped with that, because they’re both very, very driven, very determined people anyway, and they kind of made me... the sort of saying of ‘don’t let them get you down’ sort of was very well... very, that basically summed up what they stood for, and what I stand for is the same: don’t let them get you down.
 

Although her surgeon was suggesting further operations Lizzie reached a point where she was content with her cleft treatment and her appearance.

Although her surgeon was suggesting further operations Lizzie reached a point where she was content with her cleft treatment and her appearance.

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I mean I did have quite a long time to think about it, think about my treatment and what I was going to go through. ...The only thing I would say about my surgeon, especially in the latter stages of my treatment, was I felt like I wasn’t really a person, I was more like a canvas, which I didn’t particularly enjoy. You know, I’m thinking, “I’m a person, I’ve got a heartbeat, treat me like an indivi- treat me like a human being rather than just a painting which needs, you know, things sort of, you know, improved on.” That was the one thing that I really didn’t like. And after my last operation my surgeon said, “Right, we can do ...a little more just to tidy the nose up,” and I said, “I don’t want any more. I don’t want any more surgery,” you know.

How old were you at this point?

I was 22 when I had my last op. And so we’re sort of talking about sort of almost four years ago now. And I said, you know, “I’ve been through enough surgery, I’ve been through enough pain, I’m very happy with the results, I don’t want any more work done. I’m fed up,” you know.

Right.

And I think he was actually quite taken aback with me sort of saying, “No, enough is enough, I don’t want any more surgery done.”

OK so would you say from their perspective there’s a kind of never ending kind of process of refinement and?

Yeah I do. I think definitely when it comes to surgeons, surgeons are always going to be perfectionists, they want something to look as good as they, you know, as they can. And possibly, yes, he could have done more to improve the way that my nose should look but, you know.

Right.

I don’t, well I just said, “Look, I don’t want any more done,” I said, “I’m so, I’m so thankful that you’ve done what you’ve done to me already, you know, I’m so happy with the results, but I just don’t want any more surgery done.” And I think he was... he accepted that, but I think he was quite sort of taken aback, because I think he thought that I would say, “Yeah I want more and more and more and more and more.”

Yeah.

But I just said, “No, enough is enough, I don’t want any more.”

OK.

So, but he respected my viewpoint.
 

Lizzie adapted well to the transition from school to university and has an open attitude to others who ask about her cleft.

Lizzie adapted well to the transition from school to university and has an open attitude to others who ask about her cleft.

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I’ve never had a very big circle of friends. I’ve always been that kind of person who I have very, a few sort of very, very close friends. I did have experiences at school where I thought people who were my friends turned out that they weren’t. Because I went to an all-girls school, and actually I found that girls were worse than boys, because they can be incredibly catty and they can be incredibly cruel what they say.

Was this at primary school, was this an all-girls?

Primary school and secondary school I went to all girls.

Hmm OK.

And it wasn’t until I actually got to uni that I actually started socialising with boys again, and that was a... that was an experience. But when you get to university people don’t really care, because there’s so many different, you know, groups of people that, you know, they don’t see it, they don’t see the cleft, they don’t see anything, they just see you.

Where is this, sorry, at?

At university yeah.

So you found university distinctly different to school, in terms of socialisation?

Absolutely. I was quite... I was nervous about university because I didn’t actually know what to expect. But literally within the first couple of days I’d sort of settled in and was absolutely fine. Because I found that there were quite a few girls who had never been away from school…

OK yeah.

…and I could help out with that, because I went to boarding school.

OK yeah.

And that, you know, I could help them with their homesickness and things like that. So that sort of helped me.
 

For Lizzie, meeting a long-term partner has made her more confident in her personality.

For Lizzie, meeting a long-term partner has made her more confident in her personality.

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I mean I’m, since I’ve been with my other half, I’m more inclined to show how I feel.

He’s sort of breaking down the barriers a little bit by little bit. And he... in the... early stages of our relationship it was quite difficult because he was the first sort of proper partner that I’d had and... it took me a lot of getting used to, the fact that someone actually found me beautiful, someone who actually loved me for me, and that took a lot of getting used to.

OK I appreciate that.

A lot of getting used to.

Yeah, so how long have you known each other?

...Been together for five and a half years and we sort of knew each other a few months before then and, you know, that, so I’d say cracking on for six years, so... a long time, a long time.

So it’s a well-established relationship, yeah?

Yes, yeah. And you know, he did ask a couple of questions but it was more sort of... it wasn’t in a way which made you think, “Oh, you know, I want to hide,” it was just, you know, he wanted to know more about... you know, the scar…

Yeah sure.

…you know, the tell-tale scar of the cleft lip, more than anything else. So... I told him... so.
 

Lizzie recalls that she was not included in making decisions about the cleft surgery she received as a teenager.

Lizzie recalls that she was not included in making decisions about the cleft surgery she received as a teenager.

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What sort of engagement have you had with the team?

With the braces, I just sort of... accepted it as just part of the treatment. When it came to the surgery, my surgeons I always remember sort of said, “Well this is what we would like to do, you know, and these are the kind of results that we think we can get.” And, you know, I think it was more like... just sort of saying, “OK that’s, that’s absolutely fine.” It wasn’t until my sort of... last couple of operations that people, that my surgeons actually said, “Well... what do you think?”

“Would you like to go through this? Would you like to have more surgery? Wouldn’t you?” You know, it was just sort of expected that I would sort of say yes.

OK so there was an assumption that you would go through?

Yeah, and I mean I, I’m glad I did. But it wasn’t... from my recollection it was only like the last couple of ops that I actually had where people actually started asking for my personal input, you know, “What do you think? Do you want to have this? Do you not want to have this?”

And how old were you then?

I had my first nose op when I was 21.

OK yeah.

So I was an adult.

OK yeah.

And yeah I mean it was... it was strange. It was... it was nice being asked for my opinion on what I like and what I, what I didn’t want. I still said yes, and I’m glad I did. But it wasn’t until I sort of got to my 20s that people actually asked me, you know, for my input.
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