I don’t really remember much, but from what my mum tells me, it was around the time she took me to visit family in Atlanta. And when I was going there, I was completely fine. While I was there, I sort of began itching and scratching and on the way back you could tell by just well, she didn’t know it was eczema then. She just assumed it was dry skin. But it was sort of developing eczema. So, yeah, and as time progressed my parents were very concerned, because I wouldn’t stop scratching. I would always cry about it. I was in a lot of pain. So they would try all sorts of cream. I mean, the amount of time and money my parents invested in trying to find a solution is quite sad, actually, because they did have to go through a lot.

That was the sort of, my first taste of sort of random independence where I had to start translating for my mum cos there would be occasions where doctors could not get translators or interpreters in. So, it would kind of end up being my responsibility to, having to make sure I understood what I had to do with certain creams and how to use them. My mum also had to understand it, and it was really difficult in my early years cos admittedly I was naïve; I was a child so half the time I didn’t pay attention, or I ignored all the doctor was saying which usually brought back problems later on when you got the medication. Fortunately enough obviously medication has the instructions written on but if a doctor has sort custom instructions, like specifics.

So, he’ll say like sort of ten millilitres of this, or something like that, and if a prescription only says, ‘Take it twice a day,’ that’s when the real problem kicks in. Medication may say take it twice day, but it won’t specify how much you’re meant to take and if I haven’t been paying attention that’s going to make a big probthat’s gonna cause a big problem to a dosage or what I take. So, it’ll later result in having to call back the doctor and my-myself being there present, phoning the doctor up and saying, “How does so and so work cos I did not catch you earlier?”

I’ve never asked them to step back, they’ve just done it themselves. And I don’t know if that’s because my behaviour has made them more inclined to do it, or whether they’ve done it because they want me to be more independent about it. I don’t know. My mum has always wanted to come with me to my appointments when I was older. But I’ve always said, I want, I want to do it on my own because I want to speak to my doctor. Cos [laughs] she had a habit when I was younger of coming with me to the doctor and saying this and that and deciding what was being done for me. And I needed to take that independent step to get it sorted on my own. So I am thankful for that. And I think even if they didn’t mean to do it, it’s still had a good impact on my life.

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.

She would come home with kind of creams from like health stores and stuff and those like tried and kind of like herbal like pills to take that would like cure from the inside and stuff and like definitely tried them but if, I’d get so frustrated because if I didn’t get an initial, an immediate, if it didn’t immediately get any better I’d just get so angry that it wasn’t fixing it. And just there’s, there’s nothing, to this day there’s nothing that like will, other than the steroid cream, that will overnight fix it. And so obviously none of that was when it was really, really bad because today the steroid cream fixes it overnight but I never, it’s not as bad as it was then so I’d just get so frustrated I wouldn’t actually like see through all these hints and tips, that was probably half the problem [laughs].

Did your mum sort of also do online research about eczema and?

Yeh I think that’s probably where she picked it up. Also mum’s really good at chatting so I think a lot of chatting to people and obviously loads of people suffer from eczema so I think, when it was really bad she was talking about it a lot because she was obviously worried about me and anyone, anyone who kind of, had the magic tip or like Oh this really helped for my son and daughter, she’d come home with immediately [laughs].

Oh yeh like every now and again the dermatologist nurse would offer me like this new treatment, new creams or, or some sort of surgery or treatment kind of thing. So I’ll obviously go back to my uncle and he will explain to me properly what, what the ups and downs are what the, stuff like that basically, and so yeh. So he is quite handy I guess if I missed out any key information I guess on the day, so yeh.

Could you give me an example of the sorts of things, conversations you’ve had with your uncle where he’s been sort of able to fill you in on some of that information?

Okay so recently I had a conversation with him regarding this new cream that’s called Protopic that was offered by my dermatologist nurse, she said it would probably improve the redness of your skin. And it was different because I thought it was, I thought it was a steroid but my uncle explained it’s not a steroid so you can use as much, as much of it as you want, but yeh. So I started using it basically and sort of kind of, I kind of saw improvements in places but before I try creams or any new treatment I kind of test it out on my skin first so I’d put a bit of it, I’ll apply a bit of it on my arm for a day or so and see how it goes and then use it or not use it after that, so yeh.

My mum used to turn it into a game, cos I hated doing my creams, so she’d turn it into a game where I would have to run around and she would try and catch me but I wasn’t allowed to touch anything. And if I touched something that means she’d caught me. So yeah we used, she used to make a game out of it that sort of thing.

That’s quite clever, do you know where she learnt about that?

I don’t, I think she just generally made it up cos I was a little shit [laughs]. Cos I didn’t, didn’t like my creams being done so, and she used to get my brother involved in it as well but like the stuff that, she’d just put the moisturising cream on him so he didn’t feel left out, yeah. That’s what she used to do.

If my skin was bad, so it would be red and open sores and everything my Mum would put my eczema cream in the fridge and then, so it was cold. So if it’s cold, it doesn’t burn so much and it really reduces the scratching, itchiness. And then she would coat my skin in it and then coat the bandage in it and she’d wrap it round everywhere that had got sore or that I could, and it was mainly to reduce like the pain of it but to stop me from scratching. So anywhere that it was present, the eczema or anywhere that it looked like it might go. So if I had eczema here [points to part of arm], I had a bandage from here to here [points to length of arm]. And I’d have to sleep in them and if it was bad, then I’d have to go to school in them. They’re, sadly the creams smell like, like cream. They don’t smell revolting or anything and you wouldn’t be like, [inhales deeply] I smell cream. But I mean like, it’s just, I think I smell it, and individuals smell it on themselves a lot more than what it actually is.

But it’s always like that kind of like, Hmm and then when you’re notably wearing bandages I think that makes you feel a lot more noticeable. Like people mention like, Oh, why are you wearing them? And you’re like, Well, my skin’s bad. And then obviously little children are like, Ergh, that’s disgusting. Look at your skin. And then, but, like, it’s just they don’t really understand what it is, they feel like they can catch it or something like that, which is ridiculous.

My dad had the most prominent role in my eczema. He was always there to put my creams on for me, bathe me, come and sit with me in the middle of the night cos I couldn’t sleep cos it was so itchy and aggravated. I think it was very painful for my mum to watch me grow up with it and stop it from, me from being sort of a normal, healthy child. That I couldn’t, I couldn’t go out and play with other children because they might be, they didn’t understand what was wrong with my skin. Or I couldn’t go, I couldn’t go swimming. I never learnt to swim as a child because my skin was so bad. Which has been a hindrance. And it, it’s just general things like that that have had a big, a big impact.

When I was in primary school, I think at least once a week I would have to go home, because of my eczema. Sitting in class, especially when you are bored you begin to scratch and I think that’s something I sort of notice now. Like you subconsciously begin to scratch and then I still do it to my face now [laughs] I have to be careful about that. But when I am not careful then I realise what I’ve done and that it’s really stinging and itchy. So my dad would always get a hard time having to pick me up. So he would have to come like out of work, usually. Because his job back then was quite flexible and it was quite fortunate to have him around, but if not him then one of my aunties would pick me up or something. And I did miss a lot of school.

I mean a few members of my family have eczema. So m-my dad has it occasionally, my sister had it occasionally and my uncle has psoriasis, which is a kind of generally a lot worse. So immediate family like it always used to be a, a topic as you’re growing up, you know, how’s your skin, what’re you doing, because you don’t have to discipline to go through and do, do all the things that you need to do day to day by yourself. So you need a, a lot of support from your parents to just go through the kind of process of keeping yourself moisturised and up to date and that. As I’ve got older, it’s become less of a kind of concern, unless I’m experiencing a big flare up, people’ll be saying, well, you know , what’s up, basically. And that’s, you know, I’ll kind of know the reasons myself. But I, I haven’t massively talked to family about it, recently.

Cos I have my big sister who’s, who’s always been really supportive and just been like, If anyone cares about what you look like, that has no bearing on you, it’s just them. But also, when it was getting bad, I just felt like, Oh, I can’t leave the house. What am I going to do?’ And I wanted to leave the house. I didn’t want to stay in and it just made me feel like, Well what am I going to do?’ So I, it started slowly. I didn’t like wake up one day and say, I love my skin. Screw you.

[Laughs]

I started slowly and then I realised no ones’ going to say anything and if they do, everyone else in this place is going to look at them like they’re arseholes, because they are. And then I started thinking, Well, if no one’s going to say anything, are they even noticing?’ Like when it was massive, like really bad and spread over big parts of my skin, I’d be like, yes they can notice. I bet they think that it’s disgusting. I bet that I’m putting them off their food or something. And slowly I’d go out and probably sit in a café and I’d be like quite, and I’d notice that no one, no one was looking. No one thought anything of it. They did not care. Occasionally you’d probably got someone look at your arm and then walk off. And I realised that they may think like, Oh, look at her skin,’ for five seconds and then they’ll never think about it again. Or even pass through their mind at all after that one second of them going, Oh, look at her skin. And that doesn’t even, just because they looked it doesn’t mean that they’re hating like on your skin.

Stress is really bad for it.

OK

But not every kind of stress because stress at work, it doesn’t affect it. Friends not really, only family, and I just, I just told you about, I just thought about it with my mother when I was home a couple of weeks ago that I’m kinda like-, I like to dictate and I like to be the ruler. I like to tell people what to do and I don’t really like when they tell me. And at work when they try to push me down.

I always go like, Yeah OK, I just let them. I smile at them and I ask like, Yeah OK, it’s alright, and when they calm down and then I give everything back.

[Laughs]

But I cannot do this one with my parents because I love my family and they stress me a lot and my brother as well. And my brother is like the closest person for me in the world but he can stress me in such a bad way [laughs]. No-one can make me feel as stressed as him.

If I’m sad it doesn’t trigger the eczema, if I’m only sad. Only the stress and only this kind of emotional stress everyday, driving a car; someone comes in front of me; I get angry, I push the horn it doesn’t change my skin. Work or other stuff. It’s mostly emotional, only my ex-girlfriends could trigger it, and then my family. Yeah.

Because those are the kind of relationships that I cannot push down in how I would like to. Because at work it’s easy because if, even if it’s my boss and tells me something really bad, I can still punch him. They’re going to fire me who cares, I’ll find another job, but I cannot do this with my father or my mother [laughs], so that’s kind of really bad because I have all this pressure inside me and I just think can’t get it out. And then my mother comes to me and, Hey, talk about it. I don’t want to talk about it because I talk about it and then I get angry again [laughs] and it makes no sense. For me.

When I was little and we found out I was allergic to cats, the cats that we had were short haired ones that weren’t a problem anyway but now my mum recently got a ragdoll cat [laughs] which is like the fluffiest creature you can imagine and it’s not really part of the conversation anymore, I just deal with those things, I think. sometimes if I’m sat at home sneezing then my mum will say Oh you’ve been sniffing the cat but [laughs] yeh I think it’s just, I think it made an impact when I was younger but not so much now.

I have to keep my bath really clean, especially cos I share it with my mum and dad and my boyfriend. I need to clean it after every time I use it and before I use it. Cos I just can’t risk being, sort of my bath being well, not infected but having some component of what somebody else has used. Because I can only use the things that I know will work for my skin. I couldn’t go out and buy like an Imperial Leather bath soap or something like that and expect it to work. Even with some, even though I like using Lush products, I can’t use some of theirs, like their bath bombs. Because they’re so heavily, sort of potent with smell that the fragrance will irritate my skin and whatever’s been made to colour it will irritate my skin. I try to do what I can, I find it hard to do, do the washing up cos I need to wear gloves all the time. And if I wear the gloves my hands will get sweaty and dry and itchy. I have to be careful with what kind of chemicals I use. My dad’s always very particular about not letting me do he, like heavy cleaning things like cleaning windows and carpets and floors and things like that, cos he doesn’t want to expose me to those type of chemicals. And he’s worked in he used to work, worked with solvent chemicals and he was always really careful about using the washing machine for my clothes and for his. So he’d, if he put like his overalls in, he’d make sure he’d sterilise the, like the barrel at least three times before he put my stuff in and stuff like that. So I have to be really careful, really careful in that kind of thing. But I think, I look forward to that when I move out, that I can, I don’t have to worry about that too much. Because I know only I’ve used it and I don’t have to worry about everybody else using stuff and things.

As long as I kept my room tidy and like helped out, my mum did my washing for me. And, like doing it here now, it piles up quite quickly, because I, I can’t wear, once I’ve worn a piece of clothing I can’t wear it again because of my creams. So I end up doing a lot of like washing, which is really annoying because there is not like a laundry room here. You have to go for a walk and then you have to pay for it and you have to wait around, so it’s, it’s better like just taking my laundry home [laughs].

Can you sometimes do that because you are like an hour-ish away?

Yeah, yeah. If I go home for the weekend, I won’t get the train and my dad will pick me up, so I just take my laundry home and then my mum does it for me. I think she likes doing it for me, because, I think she feels like I am back home. And she knows to use like nice detergent on it.