Katie-Lauren

Age at interview: 19

Brief Outline:

Katie-Lauren has had eczema since she was a baby. She uses different creams as well as red-light therapy for treating her skin. She is now at university and finds it helpful to meet other young people affected by eczema as she can relate to their experiences.

Background:

Katie-Lauren is 19 years old and an undergraduate university student. She is in a relationship and lives in shared accommodation. Her ethnicity is White English.

More about me...

Katie-Lauren has had eczema since she was a baby. It calmed down for several years before flaring again in secondary school. She has tried different moisturisers and steroid creams, which tend to work for a while but then stop. Her eczema affects mostly her arms – including her fingers and underarms – and her legs. Triggers for her eczema include being too warm, stress and fragranced products. She tries to keep her room cool at all times and wears long sleeved clothes to stop her from easily scratching at her skin. 

Katie-Lauren has seen a number of medical professionals about her eczema and was excited about getting to see the dermatologist for the first time. However, she says that the dermatologist was rude to her, ignored what she was saying and told her to change what she had previously been using to manage her skin. Her eczema became worse afterwards and, the day before a mock exam, she was admitted to hospital and had to be sedated. The experience was so upsetting that Katie-Lauren subsequently requested to see a female dermatologist instead. The second dermatologist gave her more time to talk and ask questions but Katie-Lauren feels that there has not since been enough ongoing support. The most effective treatment that she has found for her eczema is red-light therapy. She came across this by chance at her local gym about two years ago when she was offered a free trial. Katie-Lauren noticed improvements from the first time she used it, as previously her arms were very sore and the skin around her wrist would split easily. She has subsequently asked some doctors about red-light therapy but feels that they did not know very much about it and was told that they do not offer it as a treatment option.

Katie-Lauren’s parents and boyfriend have been very supportive, though she sometimes worries that they may be upset to hear about how badly eczema can affect her life.  Moving to university was a worry for Katie-Lauren as she wasn’t sure if she would get the same level support for her eczema. However, she went to university with her boyfriend and has made new friends there who also have eczema. Katie-Lauren says that it’s nice to talk to others who have been through similar experiences. She also appreciates the help from a nurse at the university health centre who explained more background about the causes and treatment of eczema than other healthcare professionals previously had. The nurse suggested Katie-Lauren try taking antihistamines to reduce the itchiness which she now does in addition to using moisturisers. Katie-Lauren has a prepaid prescription which she says has already made the cost back from several times over. She uses steroid creams sparingly, especially since she found out that there is a production problem with one of the creams and it is no longer available in local pharmacies. 

Eczema has a big impact for Katie-Lauren in terms of her sleep and university studies. She cuts her nails short to limit damage from itching in the night and she sometimes gets up to re-apply cream and changes her pyjamas. She changes her bedding and clothing frequently, meaning that her laundry can pile up quickly. She sometimes takes her laundry back to her family home because the laundry facilities at her university accommodation are expensive, some distance away and very time-consuming to use. She finds that having itchy skin stops her from getting enough sleep which can mean she can oversleep in the morning and miss out on lectures. Her university course means that she does a lot of reading, which she enjoys but she finds it difficult to get comfortable and concentrate if her skin is irritated. Applying the creams can then mean that her hands are oily so that she struggles to hold a pen and is reluctant to get grease stains on books.

Katie-Lauren feels that doctors have often not taken her eczema very seriously. She was repeatedly told as a child and younger teenager that she would grow out of it. She is taken more seriously now that she is older but still finds that many of the GPs and dermatologists that she has seen are reluctant to listen to her. Katie-Lauren saw a counsellor during college to help her cope with some of the emotional impacts that eczema was contributing to. She found it very helpful to speak to the therapist who made her made feel that she was more than just her eczema. She thinks that doctors should be more forthcoming in asking young patients about the emotional side of the condition.

Katie-Lauren finds that she’s more likely to scratch if she stays at home when she gets in from university lectures.

So I’ll come home and probably do my cream, especially if I’ve not been able to do it in the morning. And, I’ll do work and read and stuff and if I spend all my time in my room then it’ll get worse. But if I’m out doing something, say I go out for lunch or shopping or I have to go to the library, I tend not to think about it as much, so it, it’s okay. But if I’m just in my room, sitting around or reading or something, then I’ll just sit and [gestures scratching], sometimes I won’t even notice I’m doing it.

Katie-Lauren was diagnosed as a baby and only recently learnt about eczema in more depth from a nurse at her university health centre.

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.

Katie-Lauren was diagnosed as a baby and only recently learnt about eczema in more depth from a nurse at her university health centre.

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.

Katie-Lauren was unsure about what medical help she would get when she moved to university.

I was worried about not being able to see my doctor because I didn't know whether I could sign up to a doctors here. I didn't really know much about it. But obviously there’s a medical centre, which is a part of the university. I was worried about getting prescriptions and seeing a dermatologist. But they’ve referred, like the nurse here has referred me to a dermatologist closer. So I’m going to see what this ones like, third time lucky. 

Yeah.

Yeah it’s just I was worried about not getting the same support here that I got at home. But in a way, I get more support here, because there’s a bigger variety of people and a lot more people’ve got eczema than I actually thought, because at school, it seemed like it was just me and one other girl. And we didn't really talk that much so it’s not like I could talk to her about it. 

Katie-Lauren talks about all the different medical professionals she’s seen and how they have helped (or not) with her 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.

The emotional side of having eczema is something that Katie-Lauren would like healthcare professionals to be more aware of.

I think sometimes the doctors are just focused on like maintaining it, so managing it rather than finding a way to overcome it. And I don’t really think that they think about how you feel about having eczema. I mean, I know they’re not like psychologists or anything, but they’re your doctor. They should make you feel better, emotionally as well as like physically. So I think if someone keeps going back for eczema they should ask you how it affects your life, because people might not be so willing to volunteer that information.

Yeah.

Especially when you go see a doctor, because you feel a bit nervous sometimes. Like there’s so many times I’ve been to the doctor, I’ve been like ‘right, I need to say this to them’. But it’s just gone so quickly that I’ve like left with my prescription and I’m just like, ‘I should have said something’, but they don’t, they don’t, they see you as a patient sometimes and not just as a person. 

Katie-Lauren has to plan ahead about showering because moisturising is so time-consuming.

If on that day I’m having a shower, because I try not to shower a lot, because it hurts. If I’m having a shower I will put eczema cream on before I have a shower, sometimes during the shower and then after I shower, so it’s like I’m not actually washing the cream off. It’s really irritating. 

I have to plan whether I can have a shower or whether I’ve got time to do all the creaming like before and after and during and if I’m going out somewhere, like if I’m going out on a Saturday then I will think about whether I should have a shower the night before and then just do cream in the morning or whether it’s going to be a long day and so I really should have a shower in the morning, so that I’m not sweaty all day and stuff like that. So it takes a lot of, a lot of planning. And if I’m just waking up and I’ve got a day off, if I am just in my room then I will be doing my eczema cream all day. I mean, it’s a good thing, but it’s also annoying, cos I will just keep scratching.

Katie-Lauren’s boyfriend sometimes helps her moisturise.

My boyfriend helps me a lot. I feel like sometimes when I do it, because it’s just so itchy, I rush it. And when he does it for me, he takes like, he puts a load of effort into it and it makes it feel better. I think just because he rubs over the part that’s itchy, it makes it less itchy as well, so it’s really helpful. And he always goes down, he never goes like that [rubs hands up and down over skin on arm] so if you go down, it stops the spread of infection or something like that.

Katie-Lauren doesn’t like that her shower gel substitute looks, feels and smells different to shop-bought products she previously used.

When you get like a cream to do your whole body, it can either be really oily or you can put it on and then it soaks up so quickly that it feels like you've not put any on or it can be really greasy. The one I’ve got now is quite greasy, but it works and you put, you can have a shower and then put it on and you feel dirty already. And like it makes you really sweaty and it doesn't feel nice. But I can’t not use it, so, yeah.

Katie-Lauren was prescribed a particular steroid cream but found it was out of stock in pharmacies.

And I like to stock up on my cream, especially the steroid because I went to the medical centre two weeks ago cos it was really bad. And they prescribed me a steroid cream. And I went to Superdrug cos that’s the closest pharmacist. They said that they didn't have it because it was a global manufacturing problem and they have not had it for months. So I went to Boots and they said the same. So I had to go back to the medical centre and get a different prescription. And then, she said, the woman at Superdrug said, I was lucky, because I got the last ones that they had. So I try and use it, I try and not use it, but I try and stock up because you never know when the creams are going to run out. 

Has that happened to you before, where creams that you have been using and getting on quite well with have, they’ve stopped producing them or they are just not available?

No, I mean, sometimes I have to wait like a couple of days for them to order it and get it in. Maybe sometimes they will just give me a smaller amount for time until they give me the full amount. But I’ve never had it where it’s been like a manufacturing problem and they can’t make it any more, which is kind of sad because the steroid cream I was wanting to use – I know has worked in the past. But I’ve got another one now, so that’s alright. [Laughs].

Katie-Lauren says she feels that taking antihistamines on a daily basis help keep her eczema “at bay”.

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. 

Katie-Lauren has tried red-light therapy at her local gym. She’s asked her doctors about it but not found their responses very helpful.

I went back for the check up and they saw that my eczema had improved and they were putting it down to the cream. But I stopped using the cream when I went on ‘The Red Bed’ so that I could see whether it was the cream or ‘The Red Bed’, because the cream wasn’t working the week before. And I told them about ‘The Red Bed’ and they didn't really know anything about it. They said, it’s not something that they can refer us to do. They could give us advice on what they’ve heard may help, but they can’t professionally tell us to use a ‘Red Bed’. But it’s really helpful. I mean, she, I don’t think she really knew anything about it, so she couldn't really comment on it. I’ve not asked any other doctors about it though, because, well she didn't know and I just felt like no other doctor would know.

Katie-Lauren has to plan ahead about showering because moisturising is so time-consuming.

If on that day I’m having a shower, because I try not to shower a lot, because it hurts. If I’m having a shower I will put eczema cream on before I have a shower, sometimes during the shower and then after I shower, so it’s like I’m not actually washing the cream off. It’s really irritating. 

I have to plan whether I can have a shower or whether I’ve got time to do all the creaming like before and after and during and if I’m going out somewhere, like if I’m going out on a Saturday then I will think about whether I should have a shower the night before and then just do cream in the morning or whether it’s going to be a long day and so I really should have a shower in the morning, so that I’m not sweaty all day and stuff like that. So it takes a lot of, a lot of planning. And if I’m just waking up and I’ve got a day off, if I am just in my room then I will be doing my eczema cream all day. I mean, it’s a good thing, but it’s also annoying, cos I will just keep scratching. 

Katie-Lauren keeps a lot to herself as she doesn’t want to worry her parents.

Whereas I tend to hide it away from my parents, because I don’t want them to feel bad or like be worried, because that night when they had to take me to A&E – my mum was really terrified and like my dad was really angry, not at me but, like, at the dermatologist because he’s the reason. And obviously, I don’t, like, because I had them up dead late, like we was in the A&E like 3am or something like that. And I don’t want it, I don’t like my eczema affecting other peoples’ lives. Cos obviously they would have to get up for work like three more hours later.

Katie-Lauren likes being able to take her laundry home whilst she’s at university.

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. 

Katie-Lauren’s boyfriend sometimes helps her moisturise.

My boyfriend helps me a lot. I feel like sometimes when I do it, because it’s just so itchy, I rush it. And when he does it for me, he takes like, he puts a load of effort into it and it makes it feel better. I think just because he rubs over the part that’s itchy, it makes it less itchy as well, so it’s really helpful. And he always goes down, he never goes like that [rubs hands up and down over skin on arm] so if you go down, it stops the spread of infection or something like that.

Katie-Lauren was nervous about moving to university but has made friends with others who also have eczema.

I was worried about not getting the same support here that I got at home. But in a way, I get more support here, because there’s a bigger variety of people and a lot more people’ve got eczema than I actually thought, because at school, it seemed like it was just me and one other girl. And we didn't really talk that much so it’s not like I could talk to her about it. 

If one of my friends is like, “Oh, you've got eczema – I’ve got it too”. It’s nice to be like, it’s like something that we, us, we both know about and like you feel kind of, I don’t know, not special but included when there’s someone else with eczema and you can talk about it with them. You don’t feel so alone. And other people, other people don’t understand what’s going on, but in a way you kind of feel relieved that you've found someone else that knows what you’re going through. And it’s nice to be like, “Oh that didn't work for me, but have you tried this?” and it’s like, “Oh yeah, that works for me too” and stuff like that. 

Katie-Lauren was unsure about what medical help she would get when she moved to university.

I was worried about not being able to see my doctor because I didn't know whether I could sign up to a doctors here. I didn't really know much about it. But obviously there’s a medical centre, which is a part of the university. I was worried about getting prescriptions and seeing a dermatologist. But they’ve referred, like the nurse here has referred me to a dermatologist closer. So I’m going to see what this ones like, third time lucky. 

Yeah.

Yeah it’s just I was worried about not getting the same support here that I got at home. But in a way, I get more support here, because there’s a bigger variety of people and a lot more people’ve got eczema than I actually thought, because at school, it seemed like it was just me and one other girl. And we didn't really talk that much so it’s not like I could talk to her about it.