I think I had an infection first so I ended up in the hospital and one of the doctors said, I think they said This is due to your eczema and I was, obviously I, I didn’t know I had eczema at that time until the doctor said, so yeh I think that’s when it started.

Hmm. How did you feel when the doctor said that?

I didn’t know how to feel because I think at that point I didn’t know what eczema was, if that makes sense, so yeh.

And what happened next, did the doctor explain a little bit about it?

Yeh explained like you have a skin condition for it, you’ll have to put creams and stuff, which I didn’t mind at the time because I thought that’s alright, if that makes sense, but as you, you know, get used to, to the routine and stuff it gets kind of annoying I guess cos it take up a lot of time, so yeh.

Hmm. Hmm. So what did you think the symptoms might have been because you said you had an infection, was that a skin infection?

Yeh it was I think because I probably scratched myself that’s why something probably went into my immune system and then it triggered an infection which was really bad because I had to stay overnight in the hospital. I think that infection I had to have medicine through my veins I think it was, so yeh it was pretty bad as I’d never experienced anything like that, I used to be a really healthy kid really so yeh.

Over like summer, I started having like a really itchy like vagina. So now I sort of have vulvar eczema which is actually quite unusual. And obviously at the beginning with sor-that like—cos it’s, that’s really hard to go through the NHS because it’s quite like a gynaecological/dermatological problem, so no one really knows where to put it. And obviously, at the beginning they thought like, had an infection. Or like an STI and I’ve had like so many tests until Yeah, I was like telling my mum about it and she got quite frustrated, went to like a private doctor who finally diagnosed it as vulvar eczema and has given me like steroid cream and stuff.

So, like, when you like Google outright itchy vagina’, the o-, first thing that comes up is you probably have an infection that sort of thing. Yeah, I never really thought I had an STI, that seemed unlikely Yeah, for a while I was just sort of, sort of like, oh, I don’t really know what I have, but like oh they’ll figure it out. I am taking all these tests like, sort of thing. I’m pretty sure it was the Internet that first gave me the idea that I probably have eczema.

It’s more common in sort of younger people, so everyone just thinks you grow out of it, which I thought I had [laughs]. Like, Arr, you should, youll just grow out of i, which I think that’s what a lot of people do think. But you don’t, so I think yeah, I don’t know, I think a lot of people probably associate it with sort of little kids and stuff like that. So, I think yeah that’s sort of quite difficult but, when you’re sort of, especially when you had that period without it and then suddenly it sort of comes back, it’s quite difficult, almost like if youd grown up with it, almost be easier to sort of cope with. But yeah I think everyone’s sort of perception is that everyone, you just grow out of it, and a lot of people do but at the same time – it can just sort of come back so.

What was it like when you sort of first noticed it coming back in university?

It was like unusually really bad on my face. So I got very, very flaky and very red, like quite swollen round my eyes which I still get now. And then it was just like on my hands and my, yeah, my elbows and stuff. And it was really bad. And then because I hadn’t had it for ages, I didn’t have the right medication for it and I hadn’t like got a GP or anything. So then I had to kind of find the GP and get all the medication I needed and then start managing it.

But I think it was because of like the change of environment and then also the quality of accommodation at the university halls which has like a really big impact. And the quality of the water. That’s what I think was why it suddenly became worse. And alcohol consumption [laughs]. Which – yeah.

Could you say a bit more about those factors? About the sort of —

Yeah.

— environment and different things you were doing at university?

Yeah, so I was definitely, when I was at uni I was probably drinking more than I’d been drinking at home. I was using like different water. So I moved to a different part of the country where the water quality was different and I think that had a big effect on, like on my skin. And then, I can’t think, like because I hadn’t had it for a while I think I was doing things I wouldn’t have done if I’d known I was gonna get eczema. So like using wrong detergents on my clothes, using like wrong fabrics to wear and all things like that.

I mean like over the long run it was really, really bad when I was a child. So, like when I was below six years old it was really, really bad. And it’s slowly gotten better as I’ve like become 20. But like yeah particularly between like six and 14, 15 years old it was bad and I did have these massive flare-ups, and it would be constantly bad, like nothing I could do to get rid of it. And now it’s more minor than that, I still have places where it comes up a lot frequently, and sometimes there are pieces of eczema which are constantly there but it’s not as bad as it was. Like it’s not as itchy, it’s not as red, it doesn’t flare-up as often, but there still are times when I do have these flare-ups which are particularly bad. Mainly I used to have it pretty much all over my body, but now it’s become more localised. But what I haven’t, I never had eczema on my hands until I turned about 16 or 17 years old, so that’s more of a recent thing. But yeah, I used to have it on my shins and on my feet and my hair and on my face, but that has definitely improved cos now it’s more just legs, arms and hands basically.

What do you remember knowing about eczema as a child?

Not a lot. Obviously they direct everything to your parent. Which is a problem because once they’ve started directing it to your parent, they feel like you know what they’ve already told your parent, as an adult. So they don’t retell you the things they expect you to know, even though obviously you don’t know.

But I just, I just knew that I was in pain and that I had to be bandaged up. I didn’t really understand what it was wrong with my skin. No, like, I was never really told anything. I was just, lived through it without any information. Just being told, Don’t scratch and do what we say.

So really when you get to an adult they should, or a teen, because teens do have comprehension [laughs]. But like, they should be telling you exactly what your condition is, as if it was from new to start off with. Because the understandings different now and you can fully comprehend what it is, and they should be telling you that. But they just believe that as a child you understood and you’ve carried on.

And you said that meeting the nurse at the health care centre at university for you now, that was the first time someone had ever explained what causes eczema and what it is?

Yeah. It took 19 years, but someone finally explained. I think doctors just want to give you a cream and move onto the next person. But she, she drew up a diagram and everything and told me and it’s the first time I understood. Because no one else had ever explained it to me before.

So your parents had never sort of talked you through when you were younger or, at all?

I think they tried to, but I don’t think they really knew why I had it, because none, no one else in my family has it. So it, I guess, it’s just kind of odd that I had it and they tried, they did try, like my dad would come home with like leaflets and stuff about eczema, but they were really hard to read and stuff. Whereas she like talked me through it and drew me a diagram.

Why does eczema clear up for some people as they get older, but not for others?

It’s a really important question. And we really, if we had the answer to that we might understand more about eczema in general. There’s various theories, and it’s probably going to be complex, just as eczema is complex. It’s probably going to be a combination of changing your skin barrier as you get to certain ages, changing the way your immune system works as you get older. Possibly exposure to certain infections on the skin, which might change the way that your immune sort of system responds to things. We don’t really know. But I think it’s only, it’s also probably only in a, you know, minority of people that their eczema completely clears up. Most people will still have prone-, prone skin to developing for instance in the future hand eczema, and also these other kind of allergic atopic conditions such as hay fever and asthma. So really we should think of it more as a chronic life-long condition. And what we want to do is try and prevent it being bad, you know, as early as possible. Rather than, you know, promising everyone their eczema is going to clear up. Because I think that’s often-, the young people I look after, that’s often when they feel quite despondent, when they get to their teens and they’ve still got eczema, yet they were told all through their early life that it was going to clear up. And probably only, you know, only a minority of people their eczema completely clears up. And if you’ve still got it in your teens, you’re likely to have it then ongoing into life. Not that it can’t be controlled, but that you are going to have ongoing problems.