Katie - Interview 23

Age at interview: 22

Age at diagnosis: 11

Brief Outline: Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.

Background: Katie is at university and lives in shared student accommodation. She says that as you grow older it gets easier to accept your eczema and that a positive attitude and doing the right things to improve it all helps. Ethnic background/nationality' White.

More about me...

Katie was diagnosed at 11 years of age but her eczema began to get worse in her teen years. During the periods when her eczema was severe, the skin around her eyes became red and raw. Sometimes she would also have the eczema around her mouth and that led to infections for which she needed antibiotics. She worried about people looking at her and had to stop herself from laughing when she had a mouth infection as it hurt. Both things made her feel down. 

Bad patches of eczema do still occasionally occur but not as commonly as when she was a teenager and attending school. At school she said no one was unkind or talked behind her back but peers would make insensitive remarks about her looks, not because they wanted to hurt her, but simply because they didn't know about her condition. She always told people about her eczema. 

Katie has had lots of different treatment for her eczema and has learned from experience about what works and improves her symptoms. She said that when her eczema is really bad, and she feels like scratching all the time, she takes antihistamines to calm her symptoms. In addition she has tried different types of steroid creams with antibiotics and ointments for some part of her body and cream for others. She uses an oatmeal base soap and lotion that are really mild and do not irritate her skin. She is worried about the long term effects of the steroid cream and limits its use till when her eczema is really bad.

Overall she has a holistic approach to her condition and tries to prevent her eczema from developing rather than treating the symptoms when they're there. To do this she has changed her lifestyle and avoids 'triggers' that she knows aggravate her eczema - like late nights. Katie has found that plenty of sleep and drinking filtered water helps to keep her condition under control. She is also a vegetarian.

She said that as you grow older it get easier to accept your condition and that a positive attitude and doing the right things to improve it all helps.

Has tried very many treatments over the years to control her chronic eczema and now knows what...

Well I have chronic eczema. It began to get worse my teenage years and I am managing it well now. But over the years I've had lots of different types of treatments for it. And but most now I have kind of narrowed down to a kind of things that I know work for me and things that don't, and I know that's what work for me. And if, and if I go to a new doctor and they try and give me something else then I say, 'Well no actually in my experience I know that hasn't worked for me'. 

On a day to day basis my condition it's ' in terms of how it makes me feel about myself, it's more it's a very kind of outward thing like people can see that my skin around my eyes is really red and raw. Sometimes I have eczema around my mouth and that leads to infections and I have to have antibiotics to target the infections because I get spots and things around my mouth which isn't very nice. 

And sometimes I worry that I can't that people are going to look at me. And I can't smile properly when my eczema is really bad and I have to like stop myself from laughing and that makes me feel quite down. And I felt you know that's kind of comes and goes since I was at school really and that still happens occasionally. 

But when my eczema is really severe and I'm scratching all night and just feel like there're ants on my body, I do take antihistamines.

Which just calms everything down. But when I say that to doctors, they say. 'Well we don't treat eczema with antihistamines'. But that seems to be their line on it but it helps me, so' And I'm used to taking them because I have mild hay fever anyway so it kind of you know ' I found that it really helps. In addition to that I've had different types of steroid creams, steroid creams with antibiotics in and ointments for some parts of my body, and creams for the others. Paraffin-based ointments that are horrible and make you sweat and they just make my skin worse. And then one particular kind of range of like lotions and soaps and things that you can get on prescription but are really, really mild and they're oatmeal based and that was just amazing. Changed everything for me [laughs].

Have you tried any alternative or sorry complementary medicine?

Well I'm quite open to that idea. I think the fact that I am very I know that it's not it's ' there's something I don't know what it is but aggravates my eczema and causes it ' but I know that there's certain things I can do to help it. And I know that my diet's a big thing part of that and you know just drinking good water. So I see that as kind of complementary.

She is worried about the side effects of long term use of steroid cream. She uses it only when...

Yeah, one of the things that they prescribed for me is steroid cream and  I'm wary of that because I know that in the long term it thins your skin and most of the places I've got eczema are like places where your skin is very delicate anyway, like inside of your elbows or eyelids. And you think, every time I'm doing this my skin's, you know, going to deteriorate, you know, use it. And I think, well what's, what's it going to look like in 20 years when I've been using this steroid for that long, since, you know, I was in my early teens.You know, so that's kind of a long term side effect. 

In the short term, steroids are really good because they just make everything feel like it's gone away for a little while, because they you know, take the inflammation away. So, yeah, they, that worries me a little bit.

So that's the main one?

The only other one is things that have been prescribed to me that aren't suitable to me, things that are really oily. Or water-based things. They're just, my skin just, it just sits on my skin and aggravates my skin more because it obviously, it attracts dust and things and just really irritating. So, that's like a short-term side effect. Which is just led me to not using them basically.

And what has the doctor say, regarding the steroid cream, the long-term effect? Has he said anything about it?

No, it's not something I've asked about for a long time. I've said I'm concerned about using this on my eyelids and they've said, well use this really strong thing for a little while and then stop using it. So they don't recommend that obviously long term but eczema recurs and recurs so you end up using it long term. 

Have you found any kind of natural product that helps?

I've heard of things but I haven't actually used them. Like different, like linseed oil you're supposed to take, like having a daily intake of linseed oil and, is it starflower oil? And evening primrose. Probably some fish oils but I'm vegetarian only, so, but I haven't, I think the cost of those, having to buy those from I don't know, a health food or, you know, kind of related shop, puts me off because they're just, they're a lot of money. 

Yeah.

I'm a student [laughs].
 

The GP ignored her when she was talking about a new treatment. She found it rude and felt angry....

And so I was still you know a young person away from home. And just going to a doctor that you didn't know was you know a little bit daunting because I think when you ' with a long term health condition you ' I don't know ' you get the feeling that you know a bit more than they do and then you kind of feel that they're not really listening. And I've had an experience where I'd heard about a new a new a treatment for eczema a new drug and I wanted some information about it. And I went to see one doctor. And I had the information about this, this new pharmaceutical thing and she asked to spell it to her. So I did. And then she said, 'Oh can you repeat that, I wasn't listening.' And so she actually said to me I wasn't listening and that made me feel really angry. But you know she ' and for the rest you know for the rest of the appointment, she didn't seem to acknowledge anything I said to her. She didn't appreciate ' she didn't acknowledge my knowledge and my experience because I told her several things that didn't work for me and she pretty much ignored them. And just prescribed me something that in the past hadn't worked for me at all and actually made my skin worse. So that's my most negative experience, just feeling like you're not being listened ' I wasn't being listened to. And... but my most ' some experiences have, some experiences have been good. But I think the thing that... I lack is any kind of specialist, specialist contact because I don't ' I'd prefer to... I'd prefer to know about more about eczema in general and I never get that information from the doctors that I see. 

And I want to know you know the different' the different types of eczema and what's caused and what, what causes them and the latest research about it. And I think I'd like to, to know more about that and not always have to depend on doing my own research on the internet which you don't know if it is reliable and things like that. So that's '

How did it make you feel?

It made feel ' one my personal response was angry because I just felt my time had been wasted really. And I was feeling positive you know about going to see somebody about the problems I was having and then coming away no better off. And thinking well they're supposed to, they're supposed to help me and I've come away you know feeling still rubbish.
 

At university because people are looking after themselves you hear more about others living with...

Yeah, well actually, since going to university I've met, not necessarily to say friends with but I've at least met people with other health conditions.

That I didn't really meet at school. Or at least you didn't know about it. But I think because people were away from home and they were having to look after themselves and their condition, I don't know, it came out into the open a little bit, or it seemed to. So that was, you know, that was quite an interesting discovery.

And I think by the time people are at university, they're much more just hopefully, more understanding about the world anyway. So they don't, you know, you don't get people judging you. Or you know, saying anything inappropriate. And actually people, people to me have been more supportive. About, you know, because, you know, when I'm stressed my skin gets worse so they know that there's something going wrong [laughs] because I can't hide it [laughs].

Because there is a lot of wild partying going on '

Yes. 

There can be yes. I think most people get it out their system in the first year. But I seem to catching it up now, I've got twelve weeks left.

I know if it's a purposeful distraction I'm not sure.

Okay. 

But yes there is a lot ' I don't know I think it differs in that there's less of a routine you know, being at school or having a full-time job. So for me I just have to make sure that you know, I still have time to look after my skin and make sure that I'm eating well and things because you know every' everything else is kind of here, there and everywhere' and all different things happening so.
 

She thinks that things are easier because she has become less conscious about the way she looks...

I'd say not in the long term. But I think initially I just feel self conscious and it's just you ' it's obviously it's not a difficult ' eczema's not really a difficult thing to explain because it's you know, it's a common condition and people kind of understand about it. But it just ' it ' I don't know it can just, it just can make you feel self conscious about how you look and how you appear to other people. But I think I haven't any difficulty with that in the long term. People have been very understanding ' so.

Does it get easier  as you grow older?

I think so yes, yes. I think, I think you just learn well I do to accept it and that maybe one day it'll, it'll go away which should be nice. But it might not do. And all I can do is keep doing the things, the positive things I'm doing now to, to just keep at a certain level that makes it bearable. Yes, I think it does easier because you get a ' you know, every year that you've got it you learn more about yourself. You learn about it as a condition and you just learn ways to, to deal with it.

Eczema is not a superficial or just a cosmetic issue. It affects how young people feel about...

I think with eczema and my experience with knowing people with other skin conditions is that it's very often treated as being cosmetic and therefore not as important and the only reason you want it to be treated is because you want to look a certain way. It's like having a white filling, because, you know, you don't want people to see your fillings or something. It's kind of the same approach and I think especially with young people who have a, you know, a compromised image of themselves I think it's important to not let them think that that's all it is because that's obviously, it means it's very, you know, important to them.

And, I don't know if that's, you know, I might be saying something that they already know, but I think that's important to make young people feel like it's not it's not just a superficial thing. And it affects, you know, how they feel about themselves and also like, you know, the choices they make and what they do and their happiness.