I never felt like they were just signing-off on surgery and I didn’t have any say or I didn’t know what was going on, which I think’s so important, because I think a lot of the fear around young people having surgery in hospital is that they just don’t understand what’s going on and actually surgeons are so good at talking to parents and explaining to them, and sometimes they child’s forgotten about a little bit and they’re kind of just expected to go along with it, and actually, you know, who wants to have surgery if you don’t know what the point of it is. So, I think that’s definitely where we did things right as a family is that we were always very open. And I was always allowed to say “No, I don’t want that.” That didn’t mean that was the answer, but I was always allowed to be like “Mm, not really feeling this” and we’d look at it again and see if there were other ways to do things.

And teenage girls, because so many surgeons are male and like, a lot of my scarring’s across my chest and, actually, I mean, I’m so used to taking my top off in the hospital now, but actually for a teenage girl, if you’ve got a male surgeon and three med students who are all like, you know, men in their 20’s or 30’s, all stood there, it’s intimidating and uncomfortable and I don’t think there’s enough, certainly, when I was a teenager, there wasn’t enough prep for that and reassurance and checking-in and “Actually this is what to expect from your appointment”.

But I think the time I found it the most stressful was when I was 16 and I transitioned from the children’s hospital to the adult’s hospital and I went to an appointment and the doctor spoke to ME, and I was like “Why are you talking to me? I’ve got no clue what you’re on about.” Because actually, as much as our surgeons were great, they didn’t talk to me first, they talked to my parents and my parents would be like “No, can you include her in the conversation?” You know, and so I went into this room thinking “Oh” you know “I’ll go in’ you know” “I’ll take my top off so they can see my back and my chest and look at my neck and everything. I’ll just nod along to what they’re saying” “my parents’ll you know, agree to something, I’ll agree because I know they know what’s best and then, when we leave the room, I’ll ask them to explain in the care what he was on about.” And actually, I got there, and my mum stopped talking and I was like “Why are you not talking? What are you not having this conversation with him?” and I suddenly was like “Oh! This is up to ME! Like, I need to start understanding more why we’re doing things instead of being passive and just letting people do what they want to me.” And I think that was a big learning curve, was I suddenly realised how little I knew about my own body.

I want them to talk me through what they’re doing and how they’re doing it. And for me, that’s always worked with my anxiety, in that they’re talking me through what’s happening at each stage and, actually, I’m in control. So, if I say ‘Actually, can you just pause a minute and explain’, or ‘Is this going to hurt?’ that’s the big thing, ‘Is this going to hurt? You need to be honest.’ My mum was the first one saying “Yeah it will. Yeah, it will but it will only last for this amount of time and I’m here with you whilst it happens.”

I think my parents took a very different approach to what a lot of parents do, I think, in that they were very much focusing on function and they were like ‘No, we don’t want any extra stuff’, you know, looking on aesthetics, whatever, they were like ‘Let’s just sort out function, what’s going to help her move better, what’s going to help her feel better’ that sort of thing. So, actually, there’s probably a lot of procedures that my parents bypassed throughout the years because they were like ‘Is that going to improve her, you know, ability to live, to move, to just do life? No. Mm, she can decide that when she’s an adult.’ So, I think, you know, I think their thing was, do the surgeries that were necessary, do the surgeries that would help but not do unnecessary surgery. And I think I’ve kind of carried that through to my adult life that, actually, I focus very much on what’s going to help me with movement, what’s going to help me with the tightness that I feel, instead of ‘Oh that bit’s a bit redder than the other, let’s do some surgery on it’.

I switched primary schools, so actually the first primary school I was at wasn’t very good with dealing with name calling or intrusive questions or things like that, they didn’t deal with it well and my parents were like ‘That’s not ok, let’s move.’ So, I spent the last two years of primary school at a different primary school. …but yeah [sighs], it’s tricky because actually, a lot of people, their interest is that initial 5/10 minutes and then that’s it. So, I think maybe, you know, starting a new class, going … I think even though I’m quite confident and I’m so used to my scarring, even now if I’m having a bad day, going somewhere new can feel a bit stressful because I’m like ‘Oh, I’m just going to have to deal with people looking at me.’ But actually, that’s normally just what it is, it’s normally just a, you know, look at me for a couple of minutes and then they just get over it and move on. It’s really not that exciting, you know, so actually a lot of the time it’s just that initial sort of look. And then in secondary school and in primary school, you’re with the same sort of people every day so, actually, I can imagine that year 7 at the beginning might have been very stressful but, actually, everyone knew me, you know, progressing through school, so actually very rarely did anyone from my memory, say anything.

I think I remember one boy – we were in a science class – and he was like messing around with the Bunsen burner and one of his friends was like ‘Oh careful, otherwise you’ll end up like her.’ And I was like ‘Well, the joke’s on you because I wasn’t even burnt by fire so … that’s not what you’d look like.’ Like I just … I just remember being like ‘What?’ And I think afterwards I was probably bit hurt, but I was just a bit like … I think I was quite good at just coming back with like ‘Well, that’s not the case so …’ You know, and I think my friends were more defensive than me. So, if somebody looked at me for too long, they’d be like ‘What you looking at?’ and I’d be like ‘Oh my gosh please stop, it’s so embarrassing’ because actually I was so used to it and, on a good day, I can just block it all out, I can just walk to the shop and I’m like ‘Oh whatever.’ On a bad day I do notice all the people looking at me or doing a double take or whatever, but I just try and not focus on it and get … you know, put my music on, get on with life.

But the one thing that’s stuck with me about my current surgeon in the adult service, is probably when he was telling me about the different lasers and I said to him, I said, “Please be honest, but how much does it hurt?”. And he was like, “I can tell you, because I’ve tried every one”. He was like “It doesn’t do any damage to me, do you know what I mean, to have like a-“ he was like “Obviously, I don’t have 30% of my body lasered, I had a tiny little, like you know, 10 second one” but he was like “Oh, I’ve tried every one. This one feels like this, this one feels like an elastic band flicking you, this one hurts”. And actually I was like that is what we need more of, and even my mum was like “Oh, can you just do a tiny patch on my hand so I can at least try and imagine what she’s thinking about or what’s going on?” And I guess that’s one way of parents helping their child cope, is learning to understand a little bit more what they’re feeling and what will be going on for them. And even doing it in front of the child, you know, if it hurts and you cry, actually at least the child’s seen it and gone “Ok, this might not be nice but if mum cries then I’m definitely allowed to cry” you know? Giving that and not sugar-coating it because actually having scars is not always easy and a lot of the treatments are painful, they are long or they are frustrating or, you know, and actually sometimes it’s ok to just be like “Yeah, it’s going to hurt, it’s crap actually but, you know, it will be ok eventually”.

When I get really hot my scars don’t sweat – I don’t sweat from my scars so my body can’t self-regulate my temperature, so when I’m exercising, I can overheat very easily. I hate the hot weather because I just massively overheat and I find it very stressful and I feel very unwell in the hot weather because, you know like 30 degrees, my body is just not regulating itself and it’s just… Yeah. So, there are drawbacks, I mean, I don’t want to say drawbacks because it’s not really a positive/negative thing, but you know, there are less positive things to having scars. But, you know, do they affect me enough to stop me doing what I love doing? No. I think the only times that’s happened is after surgeries and in recovery from treatment from surgeries, obviously there will be things you can’t do.