Burn Injuries

Yeah, and I think that’s what was missing. Like, I think um, for me like I was obsessively looking for that and I think if it would have been a normal time where there were support groups where you can actually meet face-to-face and create friendship, you know, it would have made a massive difference on the loneliness and the emotional side of it. So, that is something that, I think … I find it’s quite crucial when there’s something that uh… like this happened that you’re going to experience about. Like an illness, I guess, like any … any things that happen, any trauma to your body, any illness that you can have, I think if you can relate with people that go through the same things, it’s like it makes it a tiny bit more bearable, it makes you feel less alone. Makes you feel like you’re not the only one. Funny, like when something happens to you, whatever that is, a burn or anything, all of a sudden, you know, you just realise ‘I’ve never seen anyone burnt, I don’t remember, I must be the only one.’ And then, selectively your brain started to notice it around you and realise, actually, you’re not the only one. So, I think a support circle, I think is quite important.

I think it’s very difficult with the type of injury that Elizabeth has. You don’t often-, thankfully, you don’t often see many people with injuries like hers and that are so visible as well. So, that makes it a little bit more … I think … I never want to take away from a hidden scar or injury compared to one that you can see, and you can’t hide because they both have different issues surrounding them. But I think if Elizabeth could meet somebody else who she could relate to, which we’ve yet to kind of meet anybody – which I’m thankful for, because it means, you know, that there’s not many people out there with these sorts of injuries facially but, for her, I think anyone … you want to be able to relate to somebody else and there’s only so much I can tell her, there’s only so much a nurse or a doctor can tell her. She wants kind of somebody she can look at and relate to.

And then, I also got in contact with the Katie Piper Foundation, and they were amazing, they supported me a lot. They offered me – especially like my physical rehabilitation, not so much for the in person, but my whole body, considering what it’s been through, they helped, you know, with yoga, with personal training. I had, like the physiotherapist. They had time to listen to me and my problems because the physiotherapists at the hospital, they are so busy, they’ve got one patient after the other. It’s not that they don’t know, and they don’t mean to, but generally they cannot spend the quality time with you to go through any cream or help you to write a letter to your GP so they can prescribe the cream or insist that while they’ve really taken the time for me and I think complementing the therapy I was having at the hospital, I think it was quite invaluable. And they helped me with, I mean like mindfulness sessions as well, which, do you know, because it happened in such a time where you feel so isolated.

The support group from the hospital was, is the one that I’m still involved with now, actually. They were fantastic. And I think I was told about that when I left the hospital, the leader of the group might even have come up to see me while I was staying there. I think, once again, my memory of that is hazy. I just remember the very first time I attended one of those groups. I don’t remember much about leading up to it. But I do know that they told me at the hospital about it, and I went to the first one after that. And they meet once a month, is it? Or once every couple of months anyway. But the leader of that group is always available for help anyway and it made a huge difference meeting other people with burn injuries.

The big help of there was, 1) meeting people who’d had the burns a lot earlier and me realising look, it feels like they’re having quite a normal life, I can have a normal life as well, can’t I? It was talking about it in a group and being able to talk about issues that other people say “Yeah, I feel like that, I feel like that” so you don’t feel you’re alone. Being able to laugh about it together. And yeah, the leader of that group was great at bringing people together and starting conversations and contacting me afterwards.

I probably think it’s the best form of support just because you have that common experience that you can share, and I think it’s quite a close bond because it’s such a unique experience that no-one really can fully appreciate that apart from someone else who’s been through it. So, as soon as you meet someone like that, and then once you actually meet them and you also get on with them on that friendship basis, I think it can be really powerful. And the friends that I do have who are burn survivors, I do think will be friends for life. And, again, we’ll have each other to support each through, you know, life hurdles that we come across. Because we obviously met as children so, as we face new things throughout our adulthood lives, yeah, I’m sure that we’ll all be there to support each other in a way that other people wouldn’t be able to.

From your doctor, you obviously get an evidence-based answer, uh hopefully. You’ll get, you know, a ‘correct’ answer, I suppose, um, he/she, your doctor is the person with the available options for you so they’re the best to say, “We can do this treatment on this part of your scar, which will help you in this way.” Your burn survivor friends can’t do that, they can’t actually do that. And of course, your doctor, as well as telling you what he recommends, can also let you know what other options are available to you as well. So, from the practical aspect I think, obviously your doctor is needed but, I guess more of the emotional and the physical side of that, how that will actually feel, um, you then have to speak with someone who’s been through that because, as I say, only they will know how much pain you’ll be in at the time, how long you’ll need to recover, what it will do for you, what it will look like- all them sorts of things. I think a doctor can, he or she obviously has that knowledge of other patient experiences, but it probably feels more trustworthy and authentic coming from someone who’s been through it themselves.

From around age eight and then I started attending burns camps, which really kind of, that was an annual thing and that really, for me, helped in terms of the emotional recovery and also throughout the stages of life when new challenges were presenting, there was always that burns camp where I could meet other burns survivors and that would help me.

As I talked about, peer support burn camps, which usually consists of a residential week or period of time away with other burns survivors doing activities you wouldn’t usually do which, you know, need a bit of overcoming some fears to do, but also they’re exciting and something different that you wouldn’t get to do normally and having that opportunity to meet other people who’ve been in a similar situation to yourself that we wouldn’t usually come across in our day-to-day lives, and recognising that we’re not the only ones in this situation. And, you know, coming away from the camps or support groups, I think the feeling of not being isolated definitely will stick with you, as well as forming such a support network that you can bounce off of even when you’re not at the residential camps or whatever they are. So, I definitely recommend speaking with burns units because they’ll be able to put you in the direction of, as I say, what’s in your local area and what people are doing. As well as that, as well as actually, you know, staying away, there’s also a lot of support groups.

My mum always sort of pushed me to like, at first, sort of they’re like “Oh, go and do this. You’ll have great fun” sort of thing. I mean, like at eight, the thought of staying overnight with people you don’t know is a bit like “Oh my gosh!” But she sort of pushed me and went “Oh, it’s just one night, go and do it, see if you like it.” I did and I absolutely loved it and then went to camp for years. Absolutely loved camp.

But I used to look forward to getting the letters because they used to have my name on it – not my parents or anything – it was for me. And, as a kid, getting a letter through the door, you know, like “Oh my gosh, I’ve got post”. Amazing! Best day ever. And I could count on having that as every so often and it would be like the permission forms to go to camp and like they were the best letters to get because you were there like “Oh my gosh, I wonder who’s going” and as I got a little bit older and had Facebook, we’d be messaging each other going “Have you got your letter yet? Have you got your letter yet?” sort of thing. And that sense of community and friends. You didn’t even see them a lot, maybe once or twice a year but like, sort of like looking forward to it, I don’t know, sense of being connected even though you’ve not seen them in ages. Like, there was a couple of years where I went to the international camp one year, but the year before that I couldn’t go to normal camp because I had a family holiday my dad booked. So, there was a space of two or three years that I hadn’t seen the main group of friends from it, and it was completely fine going back a couple of years later and they were there like “Oh, we missed you” and that sort of thing and I was like “Yeah, I missed you too.”

Oh, that sounds lovely.

Yeah, it’s the sort of thing that you see the same group of people most years and you make really good friends, and it doesn’t seem that long that you’ve not seen them for if you go back it’s fine, like best friends, sort of thing. And it was really, really good in terms of I suppose community and making friends.

So, I kind of just grew up with the club and the kids at the club, and so I was kind of aware that there were other people that looked like me, and I wasn’t the only one for that one week a year when I got to go to club. And it’s such an enjoyable, exciting experience, and like, I think you kind of just immediately click. Like, with the kids that go to club, we’re all from different backgrounds, different ethnicities, different parts of the country but, because we’ve got that one thing in common, our scars, we just kind of like, I don’t know what it is, we just clicked.

But I guess going to club year after year, that really helped me to build my confidence and I found, I realised like, looking back, I had a fear of absolutely everything, even though I wanted to do like, I wanted to be a kid and be carefree, I was just still fearful of literally everything. And so, going to club, that really helped me to face those head-on. Like spiders, heights, people, shorts, wearing a swimsuit, climbing, getting wet, swimming, you name it. I had anything and everything you think of, I was scared of it. And I guess meeting the kids and just really bonding and seeing them overcome their fear and us doing it together, it really kind of like molds you as a person. And, yeah, it’s great.

We were quite fortunate, about six months ago we were offered a chance to go on a burns camp, um, and that’s probably the only time that I’ve ever really been … surrounded by people who’ve had similar experiences.

It was all very, you know, everyone had a different experience, they were from quite small injuries to large injuries, so various different degrees, which was, of severity, which was, you know, probably helpful for everybody. There were seven other families there. It was the most wonderful experience, I couldn’t comment highly enough on it, we were very, very fortunate. As I say, the part of the country that we live in there’s no, service of this kind, so we were very lucky to be offered a place in a different part of the UK where the whole family got to go. It was really important for my other children to you know, to be involved. But also, I think for the siblings to be invited to these things as well, I don’t know if I’m going to word this properly- so, my two older children made very good friends with a girl who had a large burn injury and I think, for her as a teenager, to be exposed to two children who don’t have any injuries, would be treated the same as everybody else, because my children, you know, wouldn’t even notice at this stage I think it was really important for the girl with the burn injury and I think it was really, also, important for, like, the children without the burn injuries. So, I think to have siblings involved, um, and be able to share kind of experiences from both sides, it was amazing and for us as parents, we were made do a psychology session, which kind of like, you know, my husband rolled his eyes at, and I think he took so much out of it, we both did and we’ve made quite good connections with other parents since then, which is you know, and some of the children are quite new injuries.

And actually, to spend a whole weekend with people who haven’t made any comment on anything to do with your appearance, it must be, I would feel, I’d imagine, quite uplifted. And a little girl Elizabeth made friends with at the camp, interestingly enough as well, her brother had a burn injury, but Elizabeth became very, very friendly with the sister, who has got no injury at all. So, it’s, you know, they all sort of-, you assume that Elizabeth’s going to be drawn to the person who’s got the scar or got the, you know, the visual difference, when actually she just wants to be friends with this girl because she wore pink nail polish or whatever she had, you know, cool hair or, she just liked her. So, it was, yeah, it was a really good experience and one which I hope we get to go on again because it was definitely, definitely very, very helpful for everybody.

Yeah, I … to be honest, I don’t really look for it. I found, when I was younger, I did a lot with the Children’s Burns Trust. They do a lot of preventative … things about preventing burns but also they provide some resources on their websites and that was good when I was younger. Changing Faces is amazing for anything to do with the more psychological aspects of just visible difference in general. …I remember reading Katie Piper’s book, that was amazing for me when I was younger. I would say it has some adult themes so, obviously, parents, if you’re going to … maybe just look over what it’s about … maybe be a certain age before you read it. I was about 16. Because it does have some … some quite extreme themes. But that was amazing as well, like looking how she dealt with it.

I think… it was, yeah, it was just watching her deal with things to do with her appearance, you know, becoming … looking different. I just never read anyone speak about that kind of thing before. You know, I mean, I can’t relate to everything in that book, she dealt with things around abuse and that kind of thing, which I couldn’t personally relate to but definitely just seeing her and the way she dealt with the scars. Also, just the fact that she is such a public figure nowadays and, like, seeing a burn victim on my screens and doing stuff with Pantene and like being seen as, I guess, beautiful. Like that … felt really amazing to me because I’ve never really seen a burn victim be like used to advertise a product, so I think seeing that made me feel like ‘Oh wow! We are being seen as beautiful and worthy and …’. And obviously, you know, beauty and how you superficially look is such a small part of your work but, I think as any girl … any like young woman, I … it always is comforting to see that on my screens and on social media, that kind of thing.

So, even though I kind of use my platform and people can see me doing like really kind of daring and out there, things and, feel like I’m super comfortable, I’m also very real with the downsides as well, like the reality of not feeling great about my scars all the time, or body image. It’s so important to show the good and the bad or the ups and the downs.

My target range, or like who I’ve thought I could inspire has always been younger people, who may have gone through something similar to me or might go through something similar, then I have. But also, I’m really surprised with a lot of older people and people, like senior to me, who’ve connected and reached out and who I meet and who’ve said like “Wow, it’s amazing what you’re doing. In my time this wasn’t a thing” or like “I hadn’t figured out support, I didn’t have like a platform like you.” So, it’s like I’m kind of bridging the gap between the two as well, of like people who had maybe less treatment or less opportunities to talk about their scars or see someone who looked like me, and now young people who really enjoy and, take inspiration from seeing someone like me so accessible and they can reach to me and DM [direct message], stuff like that.

The person I’ve been talking to quite regularly, never met her, different ages, but yes. You know, I probably will at some stage, and I hope I’ve been helpful to her, and I know it's been helpful to me.

But I suppose there's still that... the connection there is very much around the burns, so they'll probably be... I don't know if... it's probably always going to be in its separate little box because the rest of my life, I try and get... keep it more, not in its place because that's the wrong thing, but it's when you come up., when you still talk about it even though I’m a lot more detached from it still takes emotional, it's emotional toll, you know, and it's still nice to be able to just be normal.

Burn survivors don't often talk to other burn survivors.  and I think the first person I talked about it too was, I don't know, in New Zealand, there was a volcano eruption here, White Island and there was quite a few people that were burnt quite badly on that. And then I ended up sort of getting in touch with one of the people from there, just because I think they put a picture up of their legs. And I’m like that is the same as my legs but seeing it again and I remember getting in touch then and just starting to talk about stuff then was really cathartic.

So, I started gaining followers and, to be honest, I was a bit confused. I was like ‘Why are they following me? I’m really not that interesting but, ok!’ And I guess it was just like understanding what people wanted to see on my page and I guess people just really enjoyed just that I was living unapologetically and just doing what I wanted to do and that’s what people enjoyed most. So, from that, I was like ‘Right, let’s start invading some more spaces [laughs]. Where would I want to see myself if I was a younger me that I don’t see myself in now?’ And I guess you’ve got your one public influencer, who’s doing quite great and is getting an MBE this year, but then I was like ‘Oh we do need … we don’t really have a representation in these spaces who’s from the UK, I guess, who is black, who is a female and who has burns.’ And I guess that’s like a triple whammy, isn’t it? I’m fighting against all three of those! Well, I guess I should say, I guess that’s my like … USP. But I guess in some ways, if you look at it, it’s a bit of a hindrance. So, it just means that I’ve just got to work three times as hard as your average person to do what I want to do, get seen and invade some spaces. So I … yeah, I’ve … what I’ve told myself is um … to get into those spaces I’ve literally just got to open up a bit and stop being scared. I feel like there’s points where I’m really into it and I feel myself going back in time into, like, my old self where I used to literally have a fear of everything. And, you know what? I still do but what’s the worst that can happen? We’ve been in lockdown for two years, our life has been on hold, and we’ve had zero freedom, so I’ve told myself ‘If you want to do it, just get up and do it.’

Yeah, completely because it fills my feed up with people who look like me. And I think it then makes it more normal for me as well, because what I’m viewing is constant, is people similar to myself as well, and people doing you know, having that positive attitude and trying to raise awareness in a similar way. So, yeah, it helps in many ways.

Does it help you when you see someone that looks like yourself? That representation, is that important for you?

Yeah, definitely, because I think that’s a reason why I really got into the raising awareness because I feel really unrepresented anyway in general media. As I say, before I’d gone to burns camp, I’d never met anyone with a burn. I think it’s changing a bit now, it’s good that we, you know with someone like Katie Piper in the, you know, that she’s famous and she’s quite there and she’ll be there a bit in terms of in the public eye a bit more. But I think that there’s definitely a lot more that can be done for people to, you know, realise that it’s not just Katie Piper who’s burnt, for instance.