Sarah

Age at interview: 23

Brief Outline:

Sarah has had eczema all her life. Her skin cleared up during her teenage years but the eczema returned whilst she was at university. She has seen many GPs and finds it frustrating that she tends to be offered only a limited number of treatment options.

Background:

Sarah is 23 years old and a charity/youth worker. Her ethnic background is White British.

More about me...

Sarah has had eczema since she was born, continuing through to her childhood to her early teens when it cleared up almost entirely. However, when Sarah moved away to university, her eczema returned severely. She had eczema on her face for first time; the skin was very red, flaky and she had swelling around her eyes. She did not have the right medications for her skin and she was not yet registered with a GP in her university city when this big flare-up happened. She thinks her eczema came back because of all the changes that were happening, including moving to a new place (with a different water type and low quality university accommodation) and increased alcohol consumption. The GP she saw prescribed an emollient and steroid cream which started to help almost instantly. She continues to manage her eczema with moisturisers and occasionally steroids. Sarah’s eczema has become infected before, including developing sebaceous cysts and impetigo which required several courses of antibiotics.

Sarah has had mixed experiences with GPs, including receiving contradictory advice on using steroids on the face. She has asked for a dermatology referral but was told that she must first try all the treatment options. This is frustrating because the GPs she has seen tend to offer only a couple of moisturisers, for example. However, when Sarah asks for a particular moisturiser by name, she finds that GPs are usually willing to prescribe it. Sarah now tries to limit her use of steroids out of concern that these might become less effective and cause long-term damage to her skin. She once stopped using steroids altogether but this became very difficult at such a stressful time during the exam period. She has looked on some forums about steroid withdrawal and likes to read beauty blogs about products suitable for people with eczema. The cost of treatments for eczema was a big concern when Sarah had an unreliable income with a part-time job. She finds it frustrating that both prescribed medications and shop-bought products often do not offer samples, making the process of trialing different things for her skin very expensive. 

Sarah has found it very hard having eczema on the face, such as on the eyelids, around her chin, behind her ear, on the back of her neck. She has combination skin which makes it difficult to manage eczema alongside acne breakouts. She finds that thick moisturisers can cause blocked pores, leading to spots on her face and ingrown hairs on her legs. Sarah has tried lots of different cosmetic and hair styling products, eliminating those which aggravate her skin; this includes products which aren’t directly applied to the skin but disperse, like hairspray, shampoo and spray deodorant. Sarah would like to have an allergy test to help her avoid triggers but her GPs have not been supportive about this. Sarah knows of some triggers already for her eczema, including stress, a lack of sleep, dehydration, sports, tight clothes, biological washing powder, fabric conditioner, season changes, dust and animal fur. Some alcohol and sugary drinks, such as cider, also make her skin worse but she’s not sure about other food triggers for her eczema. Eczema also limits the clothes that Sarah can wear, making it difficult to dress smartly when she wants to. She tries to limit the amount of make-up she wears – she worried that it would make her feel self-conscious but she has instead found it “liberating”.

Sarah’s advice is to young people is to talk to others about their eczema, as she says that this will help them feel more comfortable. Many of her friends also have eczema and she finds that talking with them helps her “see the funny side” of the condition that people without eczema wouldn’t really know about. Sarah would also like for doctors to offer more of a range of treatments, for example different kinds of moisturisers, and to recognise how committed many of their patients are to managing their eczema well.

Sarah’s eczema cleared up during secondary school but suddenly returned at university.

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.

Sarah explains why she finds the face, especially around her eyes, to be the worst body location for having eczema.

I think the worst is puffy eyes [laughs].

Why do you think that is?

I think because like your eyes are so communicative with other people, that’s what you think people are looking at all the time. So when your eyes feel puffy, like you can’t even open them properly. And they, when you, ever you look in the mirror, you look into your own eyes and they’re like, wow, red and scaly and you look like a dinosaur. You’re like ‘oh, this is so embarrassing.’ And then you don’t want anyone else to like look at you and think you look like a puffy dinosaur. And also like, sorry. Like other things-. I think the thing about eczema, like with acne, when people see acne they kind of know what it is, they know what acne is. But when you’ve got like really red, puffy eyes, people don’t associate that with eczema. They don’t really know what it is. And they, I think it’s, kind of looks a bit strange. People don’t know why you look like that. So it, it’s a bit more, I find that makes it a bit more embarrassing. And then with spots, like you can always cover it up with make-up. Like even though it does make acne worse as well, but it’s a lot more common to be able to cover it up. But like with eczema, it’s really difficult to cover it up with make-up. It’s really hard. But then I’m sure like if I had acne I’d be saying the opposite things [laughs]. It’s very s-, like they’re two ends of the spectrum, but they’re probably like really similar in the experience of people who have them.

Sarah tries to only introduce one new make-up/cosmetic product at a time into her routine so she can work out whether it causes a reaction.

I think my other piece of a-, my other piece of advice would be to consider like maybe things that might be causing your eczema that you’d never think of before. So things like hairspray, spray deodorant, shampoo. You don’t even think of them as coming into contact with where you have eczema. So you don’t even think they’re gonna cause it. But then actually once you take them out you might see a change. So think a bit more ‘what-, what could this be other than what I think it is?’ And if your eczema’s really bad, I think have a real like, go through everything that you’re using and your whole routine and what you’re doing day to day. And you might just have to strip it completely back and, and start from really like the basics and then build up again until you can work out which products to use. Cos sometimes you might feel like you’re doing everything, but there’s something that you, that you’re doing that you haven’t even clicked. Or there’s something that you haven’t realised you’re doing all the time that could be making it worse. So I think you have to like look at it from a step back if you really wanna control it and manage it.

Sarah talks about cosmetic and bathing products which may be used on one part of the body but trigger eczema elsewhere.

And then like kind of with products, like one of the biggest things that I never realised is that like you can have eczema on your body from using products on your hair. So I, like when I was researching it online I found someone had discovered that they were allergic to shampoo. And this was kind of like one of those like ‘oh, my goodness. Like that’s probably what I’m allergic to.’ Because when you wash your hair with shampoo and then it runs all down your body. And then that’s why I think I was getting it on my back. So then like begins the process of trying to find a shampoo that you’re like not allergic to or doesn’t have sulphates in or like other like ingredients that can be quite-, what, what’s the word? Like that can cause a reaction. That’s quite difficult. There’s not many shampoos that you can buy, and when you do buy them they don’t work at all. So [laughs] that’s really annoying. And conditioners. And then mascara, definitely like eye make-up remover I think is really bad. And I always tell people who have like bad eczema on their face like, “Just stop using it.” So you can use mascara that you can take off with hot water and then you don’t even have to use eye, eye m-, make-up remover at all. I stopped using soaps and face washes for a while cos the doctors just said, “You don’t even need it.” But now I like use special ones that I don’t think cause a reaction. I think one of the other things as well people don’t think about that could be causing them eczema is hairspray and spray deodorant. So spray deodorant was giving me eczema on my eyes. I had really bad eczema on my eyes. I couldn’t think what it was. Like I hadn’t changed anything. And then I realised I’d changed my deodorant. And I think like when you spray something it can go all over and you don’t realise like that it’s settling on your skin. So then I stopped using a spray deodorant and I only use those weird roll-on ones [laughs] that don’t smell as good.

Sarah’s eczema returned whilst she was at university. Because she’d had it since she was a child, she found it unhelpful having GPs repeat what she already knew about eczema.

He just gave me the creams. Which was kind of what I wanted anyway. Like I kind of felt like ‘I know what’s going on. Like I’ve had eczema before. I just need the creams’. He was like, “Cool,” gave me the creams.  And then, then when it wouldn’t went, wouldn’t, sorry, when it wouldn’t go away and I kind of thought ‘okay, this isn’t working like. Or I need some, something else now. I need to try a different treatment’. And I went back. I remember the GP was quite patronising when she was talking to me about it. So she was like, “Well.” You, like there’s some things that if you’ve had eczema for a while like you know, okay, you’ve got to wear cotton clothing. That’s one of the first things they tell you. And she was like, “Oh, like, well, are you wearing cotton clothes?” I was like, “Yeah, yeah, I know that wearing cotton clothes helps.” She like picked up my cardigan and was like, “Oh, well, is this cotton?” And I was like, “Well, I don’t know if this is cotton or not. Like this is quite a loose cardigan. I don’t think this cardigan is giving me eczema every day.” It was really strange. And you feel a little bit like ‘I’ve had this condition and I’ve told you I’ve had it since I was born. Like that kind of advice isn’t gonna help me. I need like some more, more advice really and like more detailed’. Yeah, it was a bit annoying [laugh]. I think they’re not necessarily like experts in eczema. And I think it’s a bit unfortunate because it’s not the sort of condition that you usually need to go like to a hospital about. And it’s definitely not-, I mean most people have eczema and they don’t even go to the GP about it. They just like deal with it. Because it’s, it’s not like a hugely sickening thing that you can’t cope with. So like most eczema I think is treated by GPs. And then like it would be great if they were more clued up on it. 

Sarah found that some eczema creams blocked her pores, making her more prone to spots and ingrown hairs.

When the eczema’s bad I don’t really, I don’t get spots really when my eczema’s bad. And I just like moisturise everywhere. But then when it’s kind of like an average point you kind of like have to moisturise. And then obviously the bits where you’ve got eczema, you have to moisturise a lot. And then the bits where you’ve got spots, you’re like, ‘oh, I don’t really wanna put the moisturiser on there.’ So I end up like not moisturising my forehead at all and then putting like eczema cream like on my eyes and like the bottom of my face. And then where, wherever you don’t have eczema but you’ve used eczema cream, you get clogged pores, cos it really clogs and it builds up on your skin.

Sarah has had mixed advice about using steroid creams on her face.

I’ve used hydrocortisone and I’ve used it on my face and I’ve used it on my body. And I’ve been told by some doctors that like I can never use it on my face, like it’s completely inappropriate. Like, as I said, the chemist refused to sell it to me. Other doctors have said, “You can use it on your face. You can use it on your eyelids. You can use it for as long as you want.” Like it’s very mixed messages. And then, so you don’t know what you’re doing really. And that’s just like, [laugh] that’s quite frustrating. Because then you go to a new doctor and you’re like, “Oh, yes, I’ve been doing this and this has been working, blah, blah, blah.” And they’re like, “Oh, well, you can’t do that. Like that’s awful. You have to stop doing that immediately.  But there’s no other options.” And you’re like, “Oh, okay, well, what, what am I meant to do?”

Sarah didn’t like some things about the antibiotics she had for her infected eczema, such as the smell/taste and that she couldn’t drink alcohol whilst taking them.

They were like ones where you took one antibiotic a day. The worst things about the, like when you have the, the boils and you take like the three antibiotics a day, like they absolutely stink. This is the kind of thing I think GPs never know about. So when I went back to the GP’s they were like, “Do you want the same antibiotics again?” I asked, “Do you know what these antibiotics smell like? Because if you did I don’t think you’d prescribe them to anybody.” Cos when you open the tub it just smelt like you wouldn’t believe it. And then you had to take them. And then you have that like taste in your mouth of these like disgusting antibiotics. But, yeah, I think that’s just antibiotics, isn’t it? They’re not very nice. You can’t drink on them.

Talking to friends with eczema is an emotional and practical source of support for Sarah.

I always like mention it to, just to see if anyone else has it. But sometimes you think, like you’d never think somebody would have it. Cos you think that they’re such a like beautiful person with like the most amazing skin. And then they have it on like a part of their body that you’d never even see. So that’s quite interesting. And then you just like, we always talk about what products we’re using, what’s helping. And it was actually, my friend’s been seeing a dermatologist like privately because she couldn’t see one on the NHS. And it’s through like things that her dermatologist told her that these-, she’s then told me and I’ve then talked to my GP about. It’s like kind of managed to get like different treatments and different like creams and stuff. Which is frustrating cos you think ‘why couldn’t the GP just tell me about it in the first place?’ But, yeah, so that information kind of threads through. So it’s quite good to talk about it to different people and try different creams and different like treatments. Like hemp oil. One of my friends takes hemp oil and she’s found that’s been really useful. So that’s been something that I’ve been like trying. And, yeah, we swap it. And then also like when it’s bad you’re like, you can just say, “Oh, my eczema’s so bad,” then they’ll text you back like, “Oh, me too, I’m so itchy.”

Sarah talks about the impact of school uniform on her eczema.

When I was at high school, I went to a girls’ school where you had to wear a skirt and you had to wear tights with the skirt, or socks. But like obviously in winter it’s a bit cold with socks. And the tights made my eczema really bad. So I still don’t really wear tights now. But I had to get like the GP to write me a specific letter to the school to say that like I had to wear trousers instead of the skirts and tights to like let my skin breathe instead of wearing the nylon. So I was like the only girl in the whole school who had trousers on [laughs] and it’s cos I had eczema.

Sarah talks about eczema as an extra difficulty impacting on young people.

It’s difficult when you’re younger I think. Cos when you’re like, when you’re at school or when you’re starting uni, you’ve got so many other things that are on your mind that you’re worried about. Like it’s such a stressful time. I found it really stressful. Even if you’re like having the best time of your life in like sixth form or, or at school or at uni. But you’ve so many thing, like there’s so many things to worry about, and stresses and exams and so many pressures on your life, that it becomes just like another thing that you’ve got to deal with. And it’s so like depressing. And you’re just like ‘I can’t believe I have this. And I just wanna be like everyone else.’

Sarah first heard about Protopic through a friend who’d seen a private dermatologist.

I only knew to ask, I haven’t used Protopic yet, but I only knew to ask for Protopic because my friend had gone to a private dermatologist and she told me it worked for her. And I’d asked my GP for it. That would not be available for most people because most people cannot afford to go to a private dermatologist, like. And it’s just so ridiculous to think that girl on the, like a, like if you’re living in poverty and you go to a GP, you’re getting free prescriptions, but you’re not getting the same level of treatment as you would if you could afford to go to the dermatologist straight away. And I think that’s completely like, that’s really unfair. And that’s the same for, that’s not just eczema, that’s like all conditions.

Sarah applied for free/reduced cost prescriptions (the NHS Low Income Scheme) whilst working part-time.

So I had free prescriptions when I was a student cos I applied for it. The first time I applied for free prescriptions I had a part-time job. And like I’m sure a lot of people know like when you have a part-time job, sometimes you get a lot of money for one week and then you don’t get it the rest of the time. And the time that I applied, I must have had like a really big pay cheque and they refused me on the prescriptions. And I was just like, on the free prescriptions, and it was so upsetting cos I thought ‘oh, how am I gonna afford like my next lot of prescriptions?’ Prescriptions go up in price completely independently of any sense of inflation or like pay rises in the country. It’s really shocking when you go in and you think ‘how have you raised it by like however much it is? Like 50 or 30p or like, that’s such a big quantity to go up by each year.’ Sort of like £8 something now. So, yeah, when I, once I got the free prescriptions it was great. I just got free prescriptions. And then, then, and when I started working I kind of, it’s just like one of the expenses you just have to take into account. 

Sarah has lots of prescribed and shop-bought products she’s no longer able to use.

It’s quite expensive [laugh]. Because you, it’s so frustrating. I’ve got a whole bag of products upstairs, like quite nice ones. Cos obviously you buy the more expensive ones, thinking ‘this is gonna help and it says on the, thing like, “It’s gonna change your life.”’ And then you buy it and the first time you use it you know that you’re never gonna be able to use it again. And then you’re trying to fob it off on other people. So it’s quite expensive to go through that and it’s really frustrating. And a lot of companies don’t provide with samples. And I think that’s really annoying. Because when you’ve got like an allergy, cos if you go to like Lush or somewhere you can get a sample. The Body Shop sometimes do samples. But in Boots you can’t do that and so you end up spending a lot of money on things that then you can’t use. And it’s the same with prescriptions. So if you get prescribed something that then doesn’t work, you’ve spent like the prescription charge on that and then you can’t get the money back. You can’t get a refund on your prescription when you’re like, “This didn’t work. Why did you give this to me?” You just have to buy it again. So like it is annoying financially. And you can’t use the cheap like basic stuff because the cheaper it is probably the cheaper the ingredients are. Some cheap things are fine. But a lot of them, yeah, they’re filled with filler ingredients that aren’t good for you. So like financially it’s a bit of a pain. 

Sarah finds that looking smart for work can be difficult with eczema.

It limits what you can wear. So if it’s on your legs you can’t really wear tights. That’s really bad for it. But then also if you’re trying to go to work and you can’t wear tights, you can’t really wear like nylon trousers, which are also like quite smart. So it’s quite difficult to look smart at work. Thankfully my job now has like a really relaxed dress code. But even like skinny jeans, they’re quite tight. Leggings are quite tight. So like you have to think quite creatively when you’ve got bad eczema on your legs, to think ‘what can I wear?’ And I think that’s the same like on your back and on your like, on your shoulders and your armpits. Like ‘what can you like wear to let it kind of breathe?’ But then like on my face I think that’s really difficult. Cos if it’s bad like you shouldn’t wear ma-, make-up. Like I don’t think I should wear make-up at all. I think I’m allergic to most of the things in make-up. So, yeah, you-, that’s like quite annoying sometimes. 

Not wearing make-up to work I sometimes feel like ‘oh, well, I look a bit tired and awful today. But it’s quite good. Like I’m not wearing make-up, so maybe the, that shows that like you don’t have to wear make-up all the time if you’re a girl’. I, I quite believe that. It’s something that, like one of my friends at uni never ever wore make-up. And I just thought like ‘I f-, I don’t even care like and nobody cares. And she’s so beautiful and nobody minds,’ like. And that kind of made me think ‘okay, maybe like we don’t have to wear make-up all the time if we don’t want to.’ And that’s something that I try to like do. And then you just feel really comfortable. And it takes much less time for you to get ready in the morning. So that’s quite good.

Sarah looks at beauty blogs online to find out about products to try.

There’s a lot of like beauty bloggers online that you can read about. But there’s some that focus on eczema. It’s quite like a shady area because one person’s eczema is another person’s like dry skin. And if you see what I mean, like you don’t really know what their experiences are. But it has been quite eye-opening because there’s some people whose blogs you can read who post photos about living with it. And there’s a lot of, online about like cutting out steroids and how that’s like been for people. And you really, it’s really like ‘wow, like my eczema is not bad at all.’ Like people have much, much, much worse, like full body, like just awful. And like people who are caring for their children who have it really bad. And you think, it, it kind of puts everything in perspective. It’s quite nice to kind of see like-, there’s like a bit of a community that’s surrounding it. Especially like America and England I think are mainly the people that I’ve found online. But it does like put you in, like it puts it in perspective. And also like I, even though I had friends with eczema, I hadn’t like known anyone who had the same like puffy eye things that I got. And then like someone posted a photo online of it. I was like ‘that’s exactly what it, it’s like.’ And it was so like ‘oh, like I wish I could meet this person and be like, “I have exactly the same problem as you.”’ And then I’ve used like products that I’ve found like recommended on like eczema websites or blogs.