I’ve probably seen them all my life, even in the beginning. But yeah I’ve been visiting a doctor for my eczema forever so, probably the first time I saw them, and I remember, is around like six years old maybe. But it’s always been the same, like just getting prescriptions and like prescriptions over and over again, just reapplying for the same prescriptions all the time. So it’s like a second way of life; you just end up, you know, cream is just part of your daily routine.

So, when you’re dealing with doctors who don’t really, who don’t think of it as an actual condition they just think of it as like, oh, you’re being really, you’re just thinking about your appearance. When in reality you’re in pain and it’s, it, your skin’s changing and they’re not really giving you the information that you’re looking for. So you want to know, Oh, what’s happened? and they’re like, Well, it happens. And you’re like, Well what does this mean? And you feel like you’re not getting the right responses. But also when they’re giving you the creams, you feel like they’re not really telling you what the creams are doing. So you, so like I haven’t been told like, because I use steroid creams all the time, does that mean that my skin is eventually going to be very weak? Is it gonna mean that I have to use twice as much? Am I always going to be progressing onto stronger creams?

Is it gonna age my skin? And like, I’ve never really been told this. I’ve just been handed something and told like, Try it. See how it works.

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.

Where did you find out about the sort of antihistamines helping sort of limit and dampen down the eczema?

I only found out about that about six months ago. At university, I went to see the nurse and she told me about it, because doctors don’t really I don’t know, doctors don’t really issue antihistamines for eczema. And maybe if you ask for them they would. I never thought about having medicine to control it. Because I always ask for something to help me sleep and I don’t really think they like giving stuff out like that. But it’s not really, it’s not really helping me sleep that I need. It’s stopping the itch, so the antihistamines work really well.

What was it like when you saw that nurse at your university? Was it your health centre or was it part of your?

Yeah, it’s the medical centre which is part of the university. And I went to see her. I wasn’t really hopeful because nothing works. I’ve seen two dermatologists now and none of that’s worked. And she gave me, she actually explained to me, it’s the first time anyone’s ever explained why I have eczema like what causes eczema and the best ways to treat it. And he gave me a steroid and a big pump-y, like a big tub. And it really helped. I think it’s the first time I felt like anyone understood what I was going through. Cos she said that she had eczema when she was younger. So it was nice to talk to, like a healthcare professional who understood what it’s like having eczema.

And how does that compare to other times that you have seen doctors and the two dermatologists you’ve seen?

Well, at school, the doctors, I kind of felt like they push, they kinda push it aside. Like they’re not, they’re sort of like, Oh, just give you a cream and it will solve it or You’ll grow out of it, or It doesn’t really matter. I did have one doctor in school who really tried, like she tried a lot and she was the one that referred me to a dermatologist and I was really excited to go see the dermatologist, because I’d been waiting years to be referred to a dermatologist. And then, I went to go and see him and he was not interested at all. He was really rude. And, he told me all the treatment I was doing was wrong even though I was telling him what I thought managed it, the things I’d found out that managed it. He was telling me that I was wrong, that I needed to forget everything my doctors have ever told me and he prescribed me medicine I’d had before and a cream I told him that didn’t work. He wasn’t very nice.

And remembering to go to the doctor, get checked up and I think, unfortunately, the doctors, GPs aren’t always as like don’t know as much about it as you’d like because they often say things and you’re like, “Yeh I know I’ve had it for all my life [laughs] I know all that, you’re telling me the same thing over and over.” And they’re also, because they can give you things like steroids and moisturising creams and sort of send you on their way and say, “Come back to us in a few months.” So they don’t refer you straight away if you know what I mean.

Which is sometimes you’re like, “Can you just refer me because I’ve done this appointment like hundreds of times. I know what’s going to happen; I’m going to come back and then you’re going to give me more creams and then I’m going to go away.”

And then when they do refer you it takes a while and, you know, your life when, especially as a young person you’re often like flitting about, going to different houses, different areas, so keeping up with the same GP is difficult. And so they don’t really follow your story and it is like when you have a skin condition it is like a story, it’s not like, ‘Here’s some antibiotics, it will go in three days,’ or, you know things like that. So you kind of need one professional or, you know a few sort of a regular, someone who knows what’s happening.

And one thing I found especially was with the GPs they’re not always as knowledgeable as you think they are. So, growing up, you just kind of take it as a given that your GP knows everything about every condition. And then, kind of come 14, 15 you start realising well, they’re just prescribing me the same thing over and over again and seemingly expecting a different response. So, if I was going to give any advice that I’d say, go and talk to a dermatologist, because they’ll know exactly what your skin needs and the different types of eczema and will have different types of treatment for it. Whereas, a doctor might only recommend hydrocortisone or one specific treatment. And, so the times when I’ve been to a dermatologist they’ve really kind of [laughs] I’ve said, Well you know, the doctor told me to use this, and they’ve basically turned around and said, Well, you know, that’s not really going to affect it because you’ve got this type of eczema or It’s a bit too bad for that kind of cream. It’s not really gonna have an effect.

So at the moment you’re at a children’s dermatology unit, is that right?

Yeh.

And will you be moving onto an adult, adult clinic at a later date?

Yeh unfortunately I have to, they told me this last time I went, I think a month ago, cos I’m coming to that age I will have to get referred to an adult clinic. But I’m not really looking forward to that because apparently there’s a huge difference because like they don’t tell you what to do apparently in the adult clinic whereas in the children’s clinic I guess they go more in-depth if that makes sense. But you have to be by yourself in the adult clinic so you have to, I guess pay more attention and they’re not going to help me out as much as the children’s nurse would.

It was my dermatologist referral, he said cos where it was, my eczema was extreme. He said that we were sort of at a loss of what to do so he referred me to there to say, is there anything you can recommend and they, they agreed to see me. So I remember like my parents made a day out if it, we went up to [city of hospital] and that. And we got there and they literally looked at me and they spoke a little bit about that medication that was on trial that they’d only tried on boys my mum said no to that and then they said, Well all we can do is wet wrap her then. So they just wet wrapped me, literally from neck to ankle. And I was just crying and screaming cos where they’d put it all across my chest as well, so I felt like I couldn’t breath, I had panic attacks, it was horrible. I got on, got outside the hospital and ripped it all off and I remember thinking that oh, that hospital is crap.

Have any of your doctors whether it’s GPs or dermatologist ever talked to you about sort of the emotional and psychological impact eczema could have?

As I was growing up, not too much. In university and stuff like that, yes, a lot more, because you’re at a bit more of a fragile time I think. Cos you, you move away from your parents and you don’t you have that, you don’t have that same support network that you would at home. So, they’ve only talked about the times where I’ve gone in at a flare up stage in the middle of exams thinking, oh god, you know, this is just the worst thing ever. And, yeah, having that kind of calming down moment where y’know, they say it’s not really the end of the world, even if you fail your exams, what was more important is, is your own health. And so that kind of puts it in perspective and I wouldn’t necessarily say that doctors speak or think about that as much as they could do.