At school, when I was at boarding school, I shared a room with a friend and I used to wake her up every night scratching my skin in my sleep so when I was, this is a really bad example today, they usually, my nails when my eczema’s bad the first thing I do is cut my nails down as far as I can so that I physically cannot scratch and even if I do its just flesh on flesh. So my friend used to make me sleep in gloves just because for whatever reason, even having cut my nails, I’d find a way to wake her up from all the scratching because that’s how raw my skin was so how loud the noise was. Really horrible for her but so she’d tie these gloves to my hands, so horrible to sleep in, so that I couldn’t wake her up and also so I couldn’t harm myself cos I’d wake up and just red raw skin bleeding sometimes just from desperately trying to like ease the pain. But I’d never wake myself up in those instances; I have woken myself up before scratching.

So I’ll come home and probably do my cream, especially if I’ve not been able to do it in the morning. And, I’ll do work and read and stuff and if I spend all my time in my room then it’ll get worse. But if I’m out doing something, say I go out for lunch or shopping or I have to go to the library, I tend not to think about it as much, so it, it’s okay. But if I’m just in my room, sitting around or reading or something, then I’ll just sit and [gestures scratching], sometimes I won’t even notice I’m doing it.

But when I was a teenager then I was a, I had a lot less self-control with regards to the scratching it and you know, sometimes it would just get to the point where I would just absolutely go to town on it, just get really frustrated and angry about it because obviously it’s hormonal as well so that didn’t help like hormone fluctuations making it worse as well. So I was quite an angry teenager [laughter] so just going mental on it and just scratching myself till I bled and, you know, ignoring advice to just leave it alone and things like that. But now I’m older then I do find it easier to sort of just be like look okay I know it itches but just don’t touch it and sort of choose instead to go and get some moisturiser and rub into in.

Could you tell me a bit about what it’s like when your skin does flare up?

Yeh it’s a bit annoying cos I get to a stage where my skins at a good point which I see as a good point basically and then all of a sudden I’ll have this infection which just makes everything pointless, I have to start again, if that makes sense. Yeh it’s not really good having infections for people with eczema it’s just really annoying cos you have to start again. Once you’re at a good point of your skin, you have to, you know, it goes to waste in a way, so yeh.

Do you get sort of a sense that a flare up is on its way or does it just come out of the blue?

Well now I can tell like, when like seasons change and weather changes I can tell that my skins going to be bad but I can control it now cos I’m at that age where I can understand how to control it. So it’ll probably flare up for a week or just go bad for a week because of the weather change or season change then after that it’s alright, so yeh.

For example I had a glass of wine last night, I woke up and my eczema’s like exactly the same but if I went out and got drunk with friends and was in a night club sweating, dancing, outside smoking and then got into bed, fell asleep for a couple of hours, God knows how many hours, anyway wake up knackered obviously, hung over obviously my skin literally will be red and fiery but usually here [points to body part off screen to arms?] which is really weird, that’s where I kind of get it from alcohol. And so that’s kind of consistently bad now I’m a student [laughs]. But because it’s kind of there, people don’t think its eczema, people think it’s a rash or I’m really contagious [laughs] and avoid me, they don’t really. And so yeh I know when I go out on a night out that I will wake up with a rash if I’ve had excesses amounts of drink. But kind of on a day-day basis, its fine and it never flares up so much. I mean I say that, if I was doing like a week of loads of partying I’d bring, and if I wasn’t at home, I’d being loads and loads of cream and I’d probably be putting on the steroid cream before it was even flared up, knowing that the alcohol was going to kick it all off.

What makes me laugh is when people get cuts, like friends, they have a cut on their hand and they’re like, and they’ll moan about it and they’ll be like, “Oh my cut,” and then keep bringing it up and like, “Oh I hurt my cut,” and like, “Look.” I have cuts on my hands all the time; [laughs] obviously I don’t say it but inside you’re just thinking, ‘I have cuts on my hands all the time but I don’t’, just get on with it. Yeh, they flare up a lot when I have cuts and it is quite annoying that, because it’s like, well you still have to use your hands but you’ve equally got to be aware of the cut because if you get anything into it, it won’t just affect the cut but it will affect the sort of surrounding area of your hands.

Like sometimes they’re just very, the worse, when they’re really bad they’ll have cuts – sores almost – very, very inflamed, like very red. Like even like an extra sort of layer of skin cos it’s so like so, they swell. And then also you get like, you know like when people have spots, like pus-y spots you get those as well.

I have like different kind of eczema; it has like different kind of stages. For example, if I eat something bad then the first one is always I start having this small red dots all over those are the scratchy ones and then it starts bleeding and I stop scratching myself daytime, but so often I just wake up and I just find like a huge scar on my arm because I was scratching myself in the night, and that’s when I cannot stop obviously. And so first I have these small dots. If I feel bad or if I eat something bad; then I have the whole wounds. And then I have like the drying off part. The drying off part is, that one looks one of the worst but that one I can live with that one. It doesn’t really feel bad at all and that’s why it’s easier to handle.

I have a sort of quite a few significant scars on my body. Sort of pa-, some don’t look like scars; some just look like sort of black head spots, just black p-patches on my skin where eczema was there, where I’ve scratched away previously. Main example is my sort of wrists here, and they’ve just got black marks on them, and even so, even so so-and-so areas don’t have eczema, I still cover up because of the scars. The scars are still noticeable; the sort of skin discolouration; the skin sort of largely differs from my normal skin tone one area will be sort of brown; the other area will be really dark brown, noticeably dark brown where people would sort of question what, what happened there, how did y-that happen? Or do you have some sort of they’d question if I have some sort of other skin disease. I don’t know, I just have hec-eczema. They’d question, are you sure, this looks like something else? I’d be like no, it’s just scarringit’s how it is.

Could you say a bit more about the chickenpox and sort of what that was like, sort of a bit more about it, if possible?

Yeah. So, I didn’t catch it when I was like a young child; I got it when I was 13 so, it totally knocked me out for about two weeks which was quite hard like being in school, having to have that time away. And then like the scarring was quite bad because my skin was already quite sensitive. So, it’s something that I’m quite like it’s hard to kind of live with because, to me they’re quite visible but to everybody else it might not necessarily be a thing. But it did take quite a long time after that to kind of adjust to living with more sensitive skin because it was such a, cos I was older, it took longer to recover. But thankfully I did recover, you know it is a really good thing but, yeah I think and that’s because it’s permanent scarring, it’s something that I now have to live with. But, yeah just take each day as it comes with that.

There was one year when my eczema was really bad and then it scarred that summer and then the following summer I was so nervous about getting tanned and had made such a conscious effort all year not to scratch because it was almost like because you couldn’t see the eczema, the scars were really horrible because no one, everyone, I kind of felt like everyone would’ve been guessing what they were because they were literally just blotchy skin. And I hated it, I was, that was as, I was as insecure about the scars as I was when the eczema was visible. and the scars have gone, so now I do get scars here [points off screen] but like I’ve always, always, always had scars there so I’m used to that and that’s never, I’ve kind of grown like to kind of be unfazed by that. But the scars on my face and my chest I hated, but I don’t get those anymore.