Aisha

Age at interview: 21

Brief Outline:

(Text only clips) Aisha has had eczema since she was 6 months old. She has tried a number of treatments which have had varying degrees of success. Even when her eczema is mild or clears, she finds the physical scarring and impact on her self-esteem difficult to deal with.

Background:

Aisha is 21 and works as a nanny. She is single. Her ethnicity is Pakistani.

More about me...

Aisha has had eczema since she was 6 months old. Her parents first noticed nappy rash and cradle cap which developed during her childhood into relatively extensive eczema. A number of areas of Aisha’s body have been affected at different times; two particularly difficult areas of ongoing eczema are on her face and scalp. Another distressing aspect for Aisha is the unpredictability of her eczema, since flare-ups can happen at any time and then heal again for no obvious reason.

Aisha has tried a number of medical treatments—including topical steroids, creams, emollients and bath oils—which have had varying degrees of success. She used a steroid-moisturiser mix which was very effective and meant that she was eczema-free for a couple of years. However, when this cream ran out, she was not able to get it prescribed again and the potency/formula details are now unknown. Aisha has since used other treatments which have been mostly ineffective and given her side-effects; for example, she tried a treatment specifically for the scalp which stung a great deal and gave her headaches. She is also concerned that the use of steroids for her eczema as a child may have caused harm, including to her immune system.

Even when her eczema has cleared up on some parts of her body, the physical scars and impacts on self-esteem have continued to be difficult for Aisha. There have been profound effects of having eczema on Aisha’s confidence, making her self-conscious and critical of her body image. Aisha’s GP arranged an appointment with a local Red Cross clinic for cover-up makeup when she was 14 years old. The experience of being taught to use the make-up then prescribed for her was very positive and “uplifting”. She now uses non-prescription make-ups which are suitable for sensitive skins. Aisha also feels that her experiences of eczema have helped her understand and be more sympathetic with other people who encounter difficulties in society because their bodies are considered ‘different’ in various ways. She encouraged other young people with eczema to be persistent in getting treatment and support from healthcare professionals such as GPs.

Aisha describes the different kinds of itchiness she experiences with eczema.

It's, yeh, it's just an itchiness that won't go away. I mean, I think most of us try to sort of, if we have like an itchiness on ourselves, we've tried to sort of just like, if we don’t itch it it'll go away and usually it does if it's just like a random itch or over your body. But this is just like, it's… like a weird sort of twitching and throbbing that it needs to sort of be itched otherwise… I don’t know, it just, you have to itch it. I mean that’s really bad because, if it was… it's obviously like I said, like a, just the circle never ends because you have to scratch it to get some relief from it but the more that you scratch it - you're making it worse. But, if you don’t scratch it you're going to feel worse so, I don’t know, it's just one of the things that even though you know it's bad you still have to do it because it's the only way that you can get any relief from it, if that makes sense?

So, yeh I definitely sympathise with people.

Because it's not an easy feat to sort of get over and just say, "Oh don’t itch it," or, "Don’t, you know it'll be fine." It's like it's really not.

Yeh it's not just a random itch, it's… I don’t know, sometimes you just want to squeeze. I’ve, I mean, I've tried it; I've just sort of tried to, well I used to sort of squeeze parts of my body to just stop it but, even that just doesn't work.

Aisha describes the changes left to her skin even after her eczema cleared.

It cleared up all the eczema itself but then I was obviously left with all the marks that the eczema had made, been there, because they'd been there for years and obviously I'd sort of scratched and rubbed and it had made itself sort of just scarred up my face really bad. And so then I just… even though it went away I still had these really big dark circles around my eyes from where the eczema used to be and in the corners of my mouth from where the eczema used to be in the corner of my mouth as well. And it was just sort of… even though it had gone I felt like it was still there in a way. I mean, obviously yeh, I mean the itchiness and the flakiness of it all, the just, the sort of terribleness that comes with the condition wasn’t there but sort of the aftermath was still there, if it makes sense. 

Aisha’s parents took her to see a GP when she was a baby. At first, they were told it was cradle cap and nappy rash but she was later diagnosed with eczema.

I had eczema when I was a baby. My mum said it just sort of started with, you know like nappy rash and cradle cap, and she thought it was just normal cos I was her first, so she was like, "Oh what is this?" And so the doctor just sort of sent me away and said, you know, "Put a bit of E45 on it and it'll be fine."  But then it sort of started getting more… just the normal symptoms of eczema you know, sort of really dry and sort of when I was scratching it, it was sort of bleeding and stuff, and so then the doctor told my mum that it was eczema and, I think, I mean it sort of cleared up quite well because I had a bit of like very, very sort of dilute steroid [laughs] and it sort of cleared up fine. And then, well I can remember it sort of being, I think around… six/seven'ish, is when it sort of started to come back.

Aisha had heard about different types of eczema but felt unsure about whether she had found reliable information about these online.

I think I've seen a few sort of articles that are very brief as well from like Patient.co.uk and like Mayo Clinic and NHS Choices and WebMD and all these sort of things. But then, on like atopic eczema which is just the general thing, but when it comes to sort of specific branches of atopic eczema there really isn't a lot out there and then you sort of go into the murky world of message boards and forums and it's… you're not too sure sort of how much you can sort of… I don’t know, I think it's that feeling again that, you know, a doctor should know more than you. For instance, so like you're not sort of a bit wary on like, "Well this person said this will work for them and this has made them really ill etc." So, how much can I believe them? But, sort of opposed to like a health professional who obviously is well versed in, you know humans and how much they can live and, you know so you just… it's just a mess [laughs].

Aisha struggled with scars from her eczema. Her doctor told her about ‘skin camouflage’, a service previously run by the Red Cross and now by the charity Changing Faces and some dermatology departments.

And so I went to the doctor I think when I was about 14 and the doctor sort of said, "OK well there's this thing called sort of coverage make-up that the Red Cross do and we could go and sort of get that sorted for you if you like?" And I thought, 'Yeh that’d be good,' because it's sort of used for like burn victims and just people who have really heavy scars, like wine marks and etc etc. So, me and my mum and my sisters, we went down to [town name] and we went to the Red Cross clinic and I got it done and it was all sort of very like, like a movie sort of set with like prosthetics and everything everywhere and all these different shades of make-up. And, I put it on and I just, I'd not even put it on my, they not only put it on my face but they also put it on sort of my arms and the back of my legs, and I just looked like a completely different person, it was just, it was really sort of uplifting and I was like, "Wow this means sort of…" It just made me feel that tiny bit more confident even though, having eczema for years, obviously sort of knocked me down internally but, just at least I didn’t sort of show it on the outside. 

Aisha talks about where she’s had eczema and the difficulties with her scalp.

I've had, so on my face; I've had it on my arms; I have had it on the backs of my knees but, I haven’t had it on the backs of my knees in a long time so that’s good. I've had it on my torso, my chest and then I said my scalp and the back of my neck. I think the back of my neck was one of the hardest places to get rid of it. But, my scalp is definitely the hardest I think because even though my face was, I think my face was a lot harder to deal with because it's just - it's so visible when your face is always there and you have to, people have to see your face and your face is always just there so, I think that’s - it was harder to deal with in that sense but, it's been hardest to sort of cure, in a sense, on my scalp because that’s just been there for years. And, I mean it went away and then it came back and it just… it sort of varies in severity if that makes sense. So, sometimes it's a lot worse and sometimes it's OK but it's never just gone and that makes you really self-conscious, like you're always like, 'Oh I need to check my hair and make sure that it's all covered up and, you know, nobody can really see it and I need to comb it thoroughly and wash it so it'll all come out,' but then if you wash it too much you're sort of taking away all the moisture and the oils from your hair which your sort of scalp needs, and it's just like I can't win [laughs]. So, yeh I think that’s the most… that’s the hardest place definitely.

Aisha was pleased to see a dermatologist after years of asking, but feels she was discharged too soon.

Personally, I don’t think doctors really know how to treat it, if that makes sense. Sort of your normal GPs – I don’t think they really do cos it's, I don’t know how common eczema is. I mean, I guess people do sort of suffer from the odd occasion of dry skin and maybe like a flare up here and there. But, I think for people who have it chronically, I don’t think they know what to do. I think that’s why it took so long for me to be seen by a dermatologist.

But when you do go to a dermatologist they do understand and it's like, oh finally somebody is understanding me. But then, because they think… what happened with me and what happens with my sister is that, once sort of the eczema has gotten a little bit better, they're like, "Oh hooray, hazar. you know, it's cleared," and it's like not really, this is just perhaps a better day than most. So, you get discharged and then you have to go through the whole process again of going to your doctor and asking them and then them sort of finding- I mean that’s what I'm in, that’s the process that I'm in at the moment. 

Aisha struggled with having scars left over from her eczema. Her doctor told her about ‘skin camouflage’, a service previously run by the Red Cross and now by the charity Changing Faces and some dermatology departments.

And so I went to the doctor I think when I was about 14 and the doctor sort of said, "OK well there's this thing called sort of coverage make-up that the Red Cross do and we could go and sort of get that sorted for you if you like?" And I thought, 'Yeh that’d be good,' because it's sort of used for like burn victims and just people who have really heavy scars, like wine marks and etc etc. So,  me and my mum and my sisters, we went down to [town name] and we went to the Red Cross clinic and I got it done and it was all sort of very like, like a movie sort of set with like prosthetics and everything everywhere and all these different shades of make-up. And, I put it on and I just, I'd not even put it on my, they not only put it on my face but they also put it on sort of my arms and the back of my legs, and I just looked like a completely different person, it was just, it was really sort of uplifting and I was like, "Wow this means sort of…" It just made me feel that tiny bit more confident even though, having eczema for years, obviously sort of knocked me down internally but, just at least I didn’t sort of show it on the outside. 

Aisha doesn’t remember her doctors talking about side-effects or risks with topical steroids when she was younger.

They never said anything about side effects, no. I mean it's always in the boxes when you get your medicine; it's always a little leaflet of it. But they never sort of said anything really, they’ve always just said use it sparingly and put it sort of half of a thumb, a finger pad onto, and be careful around the eyes and don’t eat it etc etc but, when it's come to actual sort of side effects of what long term usage of things like this can do to you, I don’t think we've ever had anyone sort of thing.

Cos I would remember. Cos if someone says, "Do you know if you use this too long you're going to die," you'd remember that alright. So, or you know, "You can become very seriously ill." I don’t think I've ever heard of anyone sort of saying. So, I don’t know if steroids are OK to use over a long time, I don’t think they are. But, I mean like when I was talking, when I was saying earlier about the forums somebody said, I sort of read about a lady who said that she'd used steroids for a really, really long time. 

And she just sort of said that, yeh she used steroids for such a long time that it's definitely sort of had an adverse sort of reaction to her body like sort of her hair's thinned and her sort of nails are brittle and everything and she sort of has digestion problems and it's just, yeh it's one of those things like whoa, if we're just pumping people full of these things that’s kind of scary [laughs]. Like, maybe it won't happen straight away but what if like, in a couple of years when I suddenly get a reaction from that usage of these really strong creams and then like because I haven’t use them in such a long time people are like, "Well how could that have happened?" 

Aisha’s says her GP wouldn’t give her steroid creams strong enough for her eczema when it was severe. Although not recommended, she sometimes used her dad’s prescribed treatments.

I had loads of different creams and nothing was sorting this out, nothing was sorting it out at all. And then my dad who had eczema, but obviously not as bad as me, I think he just had sort of the random bit like in the elbow or behind the knee. He got prescribed a 50/50 mix of steroid and moisturiser from his own doctor, sort of like a potion itself – it's not really like on the market – it was just sort of there. And he suggested that I use a little bit and we were all obviously sort of very wary because, you know you don’t mix medications etc etc. But I used it and it cleared up like overnight, it was crazy how fast this worked and how sudden sort of, it was like almost a miracle, I just didn’t believe it. And, that was for the back of my neck and then I remember my dad was like, "Well if it works on the back of your neck maybe you could start using it around my face," and then I started using it around my face and it just sort of worked as well, and it was like, "Wow where has this sort of cure been all these years?"  And, that was… yeh and then I just… it cleared up all the eczema itself but then I was obviously left with all the marks that the eczema had made, been there, because they'd been there for years and obviously I'd sort of scratched and rubbed and it had made itself sort of just scarred up my face really bad. 

Aisha talks about the different home remedies she’s tried for her eczema, especially on her scalp.

I mean there's a type of honey that’s like really good for sort of all sorts of things. And I've tried that on my head; I've tried avocado; I've just tried normal sort of olive oil, coconut oil, all sorts of things that are quite rich and that are quite really sort of oily and moisturising I've tried. But then, also I have to be wary because I don’t want to put something on my head and then it dry out my scalp which is even worse because then -- like when I wash my hair, I have to wash my hair with cold water because otherwise [laughs] it'll just aggravate it 10 times. And, like I use baby shampoo - that’s the only thing that’s sort of mild enough and even that sometimes, when it's sort of quite bad, stings and then it's just like… and then when you know, when it stings you know that’s it going to be sort of a bit infected and then you have to just whack out the steroid again and it's just a never-ending story really.

Aisha describes the changes left to her skin even after her eczema cleared.

It cleared up all the eczema itself but then I was obviously left with all the marks that the eczema had made, been there, because they'd been there for years and obviously I'd sort of scratched and rubbed and it had made itself sort of just scarred up my face really bad. And so then  I just… even though it went away I still had these really big dark circles around my eyes from where the eczema used to be and in the corners of my mouth from where the eczema used to be in the corner of my mouth as well. And it was just sort of… even though it had gone I felt like it was still there in a way. I mean, obviously yeh, I mean the itchiness and the flakiness of it all, the just, the sort of terribleness that comes with the condition wasn’t there but sort of the aftermath was still there, if it makes sense.

Aisha isn’t allergic to eating any foods in particular, but she thinks a healthy diet is good for managing her eczema.

I don’t have any sort of food allergies that affect it or anything. But obviously I try to eat healthy because processed crap isn't going to make me feel good at all or help my eczema. But, no I've been OK with food allergies I think yeh.

So, nothing sort of food related to the eczema. So, that’s what makes it even more frustrating – sort of, if I was allergic to say like, I don’t know a certain type of food and that’s what brought my eczema on, then I would just cut that out and I wouldn’t have to deal with the eczema but because I'm not allergic to any - I mean I've had an allergy patch test when I was with the dermatologist so, because I'm not allergic to anything on that patch test anyway, just who knows why this happens [laughs].

Aisha avoided having photographs taken of her when she was younger.

I think I have only like a handful of photos from the time when my eczema was really, really bad on my face. Other than that I rarely ever took photos and if I did they'd be in sort of really dark lighting [laughs] or I'd have some weird facial coverage going on, like maybe I'd throw up a scarf or, you know. But I never took photos. 

I would run out of the room when photos were being taken. I would sort of say, "No, no I don’t want to take a photo," and I would put my hand up over my face and then people would be like, "Ah." Well, this was my family they'd be like, "Fine, just get out," [laughs] “Get out of the photo if you don’t want to be in it." And, I mean they were OK with it because I was just sort of me to them and they just wanted a photo of me but, me I was like, "I don’t want, I don’t this to be a sort of a immortalised on film forever." I don’t want… yeh this is before digital cameras so, this is when you couldn’t delete them; this is when you had to take them to get them processed and everything. So, yeh it's just… yeh other than that, insisting that you don’t want to take a photo or miraculously happen to move suddenly as the flash went off and just, yeh. I mean there are a few photos where, for instance, like I went on a residential trip I think, when I was about 14 and I covered my face up. I mean we were climbing a mountain but, still I covered my face up with like the coat and I drew the drawstring around my face so you could only see my eyes. And it's just one of those weird things where I just didn’t want to be photographed at all.

Aisha’s parents took her to see a GP when she was a baby. At first, they were told it was cradle cap and nappy rash but she was later diagnosed with eczema.

I had eczema when I was a baby. My mum said it just sort of started with, you know like nappy rash and cradle cap, and she thought it was just normal cos I was her first, so she was like, "Oh what is this?" And so the doctor just sort of sent me away and said, you know, "Put a bit of E45 on it and it'll be fine." But then it sort of started getting more… just the normal symptoms of eczema you know, sort of really dry and sort of when I was scratching it, it was sort of bleeding and stuff, and so then the doctor told my mum that it was eczema and, I think, I mean it sort of cleared up quite well because I had a bit of like very, very sort of dilute steroid [laughs] and it sort of cleared up fine. And then, well I can remember it sort of being, I think around… six/seven'ish, is when it sort of started to come back.

Aisha’s family, including her dad and auntie, helped persuade her GP to give her eczema treatments.

My eczema usually flares up pretty bad in the winter, obviously with like the cold and then the central heating and it being so dry. So, that’s when it's at its worst in general but, I remember sort of when I was in Year Three it was just sort of like, it just, I couldn’t deal with it and I think I went to the doctors with, I think, my mum, [participant deleted words], my auntie, they were like, "Guys we need to sort this out." And then I sort of started getting it in my scalp which was like, "What is this?" like I, you know, you don’t know what dandruff is as a child and then suddenly to sort of have sort of big itchy bits in your head and it's sort of getting infected and it's just, it's just awful. And, I'm just trying to think… So, yeh and then it was really bad and then my dad was like, "OK nobody's doing anything; I don’t know why the doctors aren't taking this seriously," so he took me to the doctor and he sort of said, "Look she really needs something a bit stronger than sort of the zero point zero zero one percent of hydrocortisone," that obviously they want to give to kids because it's very mild but still, mine was a lot more severe than I think what the prescribed dosage for those sort of medicines are. 

Aisha was hard on herself and feared being hurt by others.

I've got this moniker for being quite angry and very sort of overtly hard during sort of school. But, I think that was just kind of, you know a barrier to protect myself because I'd been through sort of eczema and I'd also been through just protecting myself from any time of hurt that people could easily pick on because… if you’ve got something [laughs] that’s not normal, you know, you're gonna sort of think about it and you're going to stress about it and so, yeh I think you try to protect yourself from any possible hurt; even if it might not happen you still just try to… and you think the worst things so, anything anybody else can say to you won't be as bad as the stuff that you’ve already said to yourself.

Aisha didn’t talk to friends about her eczema because she didn’t want to draw attention to it.

I didn’t want to bring light to the fact that I did have eczema. If people weren't saying anything to me [laughs] then I wasn’t going to go and mention it and say, "Hi guys, you know let's talk about the elephant in the room." I think, if people chose to ignore it then that’s… as good as it was for me. I don’t think I really talked to it, to anybody – friends or family, or doctors even. 

I don’t do that in usual circumstances; I'm not a sweep it under the rug type of person but when it's come to my eczema I definitely have been. Unless somebody's asked me about it and nobody really ever has, so yeh. 

Aisha worries about people looking at her eczema and scars.

When people are talking to me and then people, when people look at me I feel like [intake of breath], 'Are they looking at the dark circles around the eyes; are they looking at sort of the scars I have around my mouth; what are they looking at?' and it's just… it just makes you ooh, it just really gets you, really, really gets to you. 

Aisha thinks a dermatologist could help her save money with more tailored treatments.

Why I don’t want to go to the doctors and I don’t want to get more prescriptions because it just costs so much. Like, I think once I had to fork out sort of about £36 worth of medications just for one particularly bad flare-up but this is my problem – like, if… the doctor would just let me go to the dermatology department and the dermatologists could see and say, "Hey, we should do this; hey, you should that," you know, "We can go from here; I know what this is; I don’t know what this is." Then, you know what, I wouldn’t have to be forking out tons and tons and it's just - it's one of those things as well, it's yeh definitely, I think when you're small and you’re under 18, it's OK because, you know it's all free but… if you're not then [laughs] it's crazy amounts of money just to... and then if it doesn’t work you're like, 'What, I spent £40 on nothing,' 

Aisha worries that her doctors wouldn’t take her seriously if she asked about things she’s seen online.

I think you kind of feel silly as well going to your doctor and saying, "Well I read this on that." I think doctors sort of, they look quite down on you that you’ve done your own research in a sense, cos they think you're being sort of a hypochondriac in a way you know, you're sort of kind of like, "Well hang on, you know I do know better than you; I am… I did a degree, I'm a doctor after all and you're kind of just somebody who thinks they're a doctor because they looked up a couple of symptoms on WebMD," but, you know I kind of feel like there should be a bit more of a better relationship I guess with the whole what is approved and what is not approved and what is good and what isn't good.

And just there is a lack of information out there.

Aisha talks about what health professionals can do to help young people with eczema.

I think they should know that it does affect people not just physically but mentally and sort of, yeh it definitely does affect people in just more than one realm of their life; it's not just a skin condition. It's not like a cut that you can put a plaster over; it's something that needs to be addressed and, you know, looked after and stuff like that. And I would also say for them to not just shove it to the side really. Yeh, if somebody does come with you and they’ve come to you a couple of times and they’ve said to you, you know, they’ve tried lots of things and, I guess know when you think… I think that point should be a kind of like, you know ‘maybe we should get you a referral somewhere or, here let's do this or something’, I don’t know. But, yeh get you an allergy test or something because you never know. I mean I don’t blame them; doctors obviously, they see what, so many patients in the day so, they can't sort of keep tabs on everything but, I think if it's a problem like that then, they really should know when to - I think just being referred should be a bit more open and a bit more easier to happen than just, you know having to be sort of severely scarred and crusty and flaky and whatnot, so yeh.