Anissa

Age at interview: 20

Brief Outline:

Anissa has had eczema since she was a baby. She has tried different moisturisers and steroid creams to treat her skin. She thinks that doctors should provide more information and support to young people who have had eczema since childhood.

Background:

Anissa is 20 years old and studying for her foundation degree. She is single and lives in student halls. Her ethnicity is Arab and White English.

More about me...

Anissa was diagnosed with having eczema as a baby. She has seen various doctors in her lifetime as well as seeing a dermatologist on one occasion when she was a young child. Anissa used to think that she would always be in pain with her skin covered in sores and bleeding. However, as a teenager, she began managing her eczema better and this has only improved further into adulthood. She now manages her skin “very tightly” by applying her creams throughout the day and showering every other day. She says that she will apply moisturisers as soon as the thought pops into her head and, if her eczema is flaring, she will sometimes wash in the creams. She knows that changes in temperature, pet fur and stress are all triggers for her eczema. For instance, she found the process of applying to university, starting her degree and taking tests in class to be stressful, and comments that her emotions are often “reflected in my skin”. 

Anissa has tried lots of creams, including steroids, to treat her eczema. Anissa’s parents used to help her when she was little with eczema treatments, including applying wet wraps. Anissa’s experiences with healthcare professionals for eczema have not been very good and she feels that doctors have only been interested when she is at the stage of having an infection. She thinks this may be because the doctors have viewed eczema as a mild condition concerned only with appearance rather than being physically painful and difficult to live with. Anissa feels that healthcare professionals tended to direct information about her eczema to her parents when she was a child and that they have assumed since that the information has been relayed clearly to her so that she understands. She feels that she has never been properly informed about her condition by a medical professional. As a result, she tends to look online for information. 

Anissa’s eczema used to affect only parts of her body with folds which tended to sweat more, such as inside the elbow, behind the knee and on her neck. Eczema affected other parts of her body as she got older, such as her chest and breasts. She also noticed eczema on her scalp for the first time about two years ago. She visited her GP who gave her an ointment for her scalp with very vague instructions on how to use it and Anissa found it extremely painful to apply. Anissa says that she doesn’t feel confident when speaking to doctors because she does not feel informed about her condition. She also finds that GPs rarely give her more than a few minutes in an appointment and they tend to just prescribe the medications previously listed on her records. Anissa says that she has experienced the doctors giving out steroids too quickly to her when they should also be educating about prevention of flare-ups and infections as well as providing moisturisers.  

The impact of eczema on Anissa’s confidence is something that she has struggled with. She was very shy at school and used to miss out on social activities due to embarrassment.Anissa thinks that the appearance of the skin has a big part in other people’s judgements and that being deemed to have ‘flawed’ skin is particularly difficult for women. She has had previous romantic partners and friends who have not really understood about how eczema affects her physically and emotionally. Anissa has since become more confident about her body image. There are some aspects associated with eczema, such as the paler scar patches in contrast to tanned skin in summer, which Anissa used to dislike but now enjoys because they are unusual “like a leopard”. Anissa has talked to doctors about the difficulties of wearing make-up, which can make her skin sore and blotchy, but they’ve only instructed her not to wear it rather than give other help she would appreciate such as signposting to suitable products. She has tried make-up for sensitive skin before but found that it was not suitable and sometimes actually made her eczema worse. She now tries to use gentler make-up, such as tinted Vaseline rather than lipstick or eye pencils rather than eye shadows.

Anissa thinks that it’s important for young people to know that their eczema will get better providing they learn to manage it well. She says that GPs should offer more support to their patients by giving more information, offering different moisturisers to choose from, monitoring flare ups more closely and helping add the use of medications into their patients’ everyday routines. Although not something Anissa has done herself for eczema, she thinks that keeping a diary of eczema treatments and their effectiveness could be useful for both the person affected and their healthcare providers.

Anissa’s doctor directed information about eczema to her parents when she was little.

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.

Anissa feels that the GPs she’s seen haven’t always appreciated how much eczema affects her.

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.” 

Anissa says that the GPs she’s seen don’t take much interest in her eczema. For example, her doctors haven’t spent much time examining her skin.

They’ve never wanted to look at it unless I’ve insisted on them looking at it. So when it first spread to my breasts, I actually didn’t know what it was because it was, it looked, well it looked like eczema but it looked a lot worse, especially because I didn’t expect it to go there. So only once I’ve insisted that they look at it. But they’ve never been like, “Oh, well you’ve been on this cream. Oh, how long’s it been sore? Maybe I should take a look at it. Maybe you shouldn’t be using your steroid cream. Maybe you should be on a better one because oh, it doesn’t look good or anything.” They’ve never wanted or cared to look unless forced to by me.

Okay.

[Laughs]

Okay, so they just sort of take what you say about it and just assume that that’s…?

Yeah but what I say about it, I don’t talk to them as if I’m informed. I’m like, “Well, you know, it’s kind of like, you know?” And they’re like, “Whatever.” [laughs].

Okay. 

So, it’s not like I’m like ultra-confident and like, “Yes, this is what I need.” And they’re like, “Well you know your skin.”  It’s just like, “Oh, well, meh”

So what’s it been like when you’ve sort of persuaded a GP to look at an area of eczema? Like, you sort of said when it was on your chest. What was that like?

It was really quick for them to say, “It’s eczema. You need to do this. Just apply the moisturisers. Apply the normal cream.” Which makes it even more ridiculous that they don’t just do that as standard because well obvious-, eczema’s really easy to spot, especially if you know the person has eczema. So seeing a rash on a different part of their body, you can pretty much guarantee that it is. But when you’re the person, you can’t. You’re not a doctor. You don’t know if it looks slightly different. If it’s in a different place you didn’t expect, you don’t know that.  

Anissa thinks it’s important to know that there is a wide range of emollients and that you can ask your GP for a different one.

I was stuck on Doublebase which is disgusting. It is, like. And it makes your skin feel greasy and I mean, like, sadly there is a thing about appearance in our culture. So when you have greasy skin because of your creams, you have that, well, people, and you smell like cream as well, never going to get over that [laughs]. But it makes it hard. So you just think that you have to put up with it, whichever moisturiser they give you, and then eventually I was like, “I really hate this cream. Can I have another?” And they went, “Yeah, of course.” It was like, “Oh, well you didn’t say that originally.” So like now I’ve got a nice moisturiser. But I mean all of these things could have been kind of sorted out if you had just, if they had just, you know, said, “Well, this kind of moisturiser does this, and it’s best used at this time, and everything like that.”

Anissa remembers having wet-wraps with cool emollient when she was younger. She found they helped her eczema but drew attention at school.

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. 

Anissa wasn’t allowed to put her creams on, or check they were rubbed in, at school. Things are different now she’s at university.

Especially with the creams being so thick as well, you can’t just be like ‘mm [gestures rubbing], it’ll dissolve in’ or, you need to rub it in properly otherwise you’re gonna have massive white patches everywhere.

Yeah. Is that the same across like primary school, secondary school, sixth form or college? 

Yeah. Yeah, if, you got, if you got a mirror out or anything or you tried to do anything – no you were definitely, well I was definitely, and I know like a few friends who were definitely belike, “Put that away.” 

“You’re meant to be in class.”

Has that changed since you got to uni?

Because uni’s like, for me especially, is very split up. So I’ll have, the longest class I’ll have is three hours. And within the uni situation, I can leave the room without asking permission or anything like that. You can just leave and come back and no one bats an eyelid. No one thinks about it, because at school, at college, you have to ask permission to leave the room and I think that makes a massive difference because you can just, well you can’t be extra late. But you could be late. But while you’re in that class, if you’re on a, like, you can go back and forth. You could leave early if you wanted to.

Yeah.

There’s nothing telling you that you have to ask permission for anything.

Anissa had eczema on her scalp. Her doctor gave her a steroid lotion to put on her scalp but she wishes she’d tried a prescribed shampoo first.

I started to notice it, so I’d be a bit itchy and I’d be like ‘arrgh.’ And I thought, you know, first of all, I was like, ‘Oh God, I hope it’s not head lice.’ [Laughs] And then obviously kept checking and getting people to check and be like, “It’s really itchy.” And them being like, “Oh, it’s really red. Oh, is it bleeding? Your scalp it’s really sore. You need to stop scratching. Something’s irritating. It’s your shampoo. It’s probably dandruff.” And then obviously changing my shampoo. Extra thoroughly washing my hair. 

 “Oh, it looks worse actually.” [Laughs] “Oh, okay maybe I should go to the doctors now.” Go to the doctors. So, I asked for a shampoo for eczema and he said to me like, “A lot of people don’t like the shampoo because it makes your hair greasy and you will smell like it.” So he, instead of giving me the shampoo he gave me, I think it’s almost the same, no it’s, begins with C, maybe. It’s a head steroid cream, that’s in a little thing like that, and it goes up and it’s like little drops that you have to, and it burns and it burns so much and no one told me. 

Right, so I was kind of thought, like I wasn’t even sure that it was a steroid cream. As soon as I applied it he was like, you know, like, “You would just shampoo, I guess.” Which basically means the only similarity to the shampoo is that it goes on your head.

Anissa talks about the difficulties when other people give advice on managing her eczema.

With family and friends, like I think it’s quite hard because no one wants to see their family or friend in pain and I think that especially when it’s a skin condition you’ve had for your whole life and you’ve dealt with for the majority of your life on your own, I think you get quite snappy with your friends and family when they’re like, “Have you been drinking enough water? Have you been applying your cream?” And you’re like, “Hold on. [Laughs] It’s my condition.” [Laughs] So I think it is quite hard for them because they just want what’s best and when they’re suggesting new things you should be trying, if you’re reluctant, they’re like, “Well why are you reluctant?” And obviously you’re reluctant because you don’t want it to get worse. But also you’re reluctant because it’s not medically prescribed possibly and stuff like that, and because they’re almost taking control of an aspect of your life which you’re gonna have to deal with for the rest of your life. So you really need to control it yourself because they’re not always going to be there to put things in place and make sure you’re doing them. And it’s, like I don’t feel, like it’s healthy to have support but not healthy to depend on that. 

And that can be quite hard to convey nicely, especially when both sides are just trying to help.

Anissa goes to her GP to confirm whether she has infected eczema and, if it is, to get treatment (such as antibiotic tablets).

So I got an infection which, like I went to them when I first got it and they were like, “Oh, it’s just your eczema. Like, just put your creams on.” And by the time that they did something, it had spread to the whole lower back and started coming to my sides.

Because like, it happens really quickly. And then at that stage, she was quite understanding and really nice and like there was no waiting for the tablets, because they’re like blue things to cure infection or something, and she, she, even though I’d just started on the tablets, she was like, “Look, if it doesn’t cure it, like go in a week, we’re going to give you an injection.” And then explain the injection and the process of having the injection and everything like that. But like to get to that stage, and I’d never even knew that you could have an injection beforehand. So, but that was nice because it made me feel like, ‘Oh God, if these tablets don’t work then I’m doomed. It’s just going to keep going.’ 

Anissa thinks doctors should be aware of the pressure on females to wear make-up.

I use make-up all the time. I’m awful. And when I wash it off my skin is blotchy and red and sore and I think to myself, ‘I shouldn’t have wore make-up’. But yeah, because I feel there’s a pressure to.  Even though I try to make sure that I don’t, I try to make sure that I’m not doing it for other people. But I can’t escape that this is the society we live in. So, even though I’m okay with my skin, I don’t think I am okay with not wearing make-up or presenting myself in a certain way. So, but I’ve heard about eczema make-up and I’ve, but I’ve never been told about it by my doctors even though I have described the problem of wearing foundation and all they say is, “Don’t wear foundation. Don’t wear make-up.” But really I think they understand what society we live in, so maybe they should be a little bit more helpful. But I have heard that it does exist. But I have tried gentle make-ups which are claimed to be for sensitive skin and in reality it’s, it’s not. 

Anissa challenges the idea that eczema is something to feel insecure about.

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.

GPs have given Anissa different quantities of eczema treatments.

Since I got it for free, he’d give me like six pumps of my Diprobase and like five tubes of my Betnovate and the other one. So that meant that I was fine. I didn’t have to think about them running out, well not for a long time, and think about being cautious of my use because of questioning and especially because I have to bathe in it, so well my moisturiser. So I was always worried that people were going to be like, ‘Oh, you used it really quickly.” And it’s like, “Well I have to wash in it, as well as use it several times a day.”

So that kind of relieved it knowing that I’d have some and knowing I didn’t have to go back for everyone one. But since I obviously don’t get it on the NHS anymore because I’m 20, it means I only get one. And then I have to pay as well and like, if it was, if they gave me several pumps or something I think it would make it better. But also with the pumps they’re massive. So I used to get tiny tubes as well when he was giving me everything.

Okay.

But now I pay for it, they only give me a pump and not the tiny tubes to carry around with me for everyday use. So it’s made it a lot, a lot harder, yeah.