Ele

Age at interview: 22

Age at diagnosis: 2

Brief Outline:

Ele has had eczema all her life. Her doctors have prescribed her a number of topical treatments with little success. She now tends to use shop-bought creams and hopes to manage her eczema in the future through a healthier lifestyle.

Background:

Ele is 22 and an administrator. She is single and lives in shared accommodation. Her ethnicity is White British.

More about me...

Ele has had eczema her entire life, but isn’t sure what causes it. She predominantly gets eczema on her hands, eyelids and the back of her knees, although she has also had it on her legs and the inside of her thighs. She feels lucky that her eczema is relatively minor, however she says she is unable to wear jeans or trousers because the material irritates her skin. Her eczema gets worse when she does not drinking enough water, eats salty food, has caffeine and dairy products, and not enough fruits and vegetables in her diet. She stays away from perfumed shower gels, uses gloves for washing the dishes and finds that cheap soaps irritate her skin. Weather changes also affect Ele’s eczema, with winter being a particularly bad season for her. She lived abroad in Egypt for a year during her undergraduate degree where the warmer climate improved her eczema. Ele’s eczema is also affected by stress and became notably worse during her A-levels and when she was diagnosed with depression.

Ele and her doctors have tried to use a variety of topical creams for her eczema with little success. She is allergic to E45 and many steroid creams. The financial implications of having to pay for prescriptions that do not always work have been a particular worry for her. She has used Bio-Oil, Dove and Nivea moisturisers in the past. Although her skin responded well to these at first, they stopped working after a while and started burning the skin on her hands. Whenever she can, she prefers to use natural ingredients to sooth her eczema. She often uses the internet as a point of reference when her skin feel itchy and she has recently tried some home remedies such as applying cold porridge and natural yoghurt to her hands.

Ele had been very self-conscious about her eczema as a teenager. There was an incident whilst she was working in a café whereby a woman told her she didn’t want her touching the sandwich she was making. Although she now feels able to openly speak about her eczema, she still sometimes catches people starring at her hands in public.

Ele’s hopes for the future are that she will be able to control her eczema through a healthy lifestyle. She worries that eating healthy is very expensive but hopes that it will be easier when she moves in with her boyfriend as they will be able to split food bills. Ele had considered trying some steroid creams again but finds it particularly difficult and impractical to make appointments and visit her GP within the working hours of her current job.

Ele found that it was particularly difficult not to scratch her eczema when she was a teenager but says that this has since got easier to control.

But when I was a teenager then I was a, I had a lot less self-control with regards to the scratching it and you know, sometimes it would just get to the point where I would just absolutely go to town on it, just get really frustrated and angry about it because obviously it’s hormonal as well so that didn’t help like hormone fluctuations making it worse as well. So I was quite an angry teenager [laughter] so just going mental on it and just scratching myself till I bled and, you know, ignoring advice to just leave it alone and things like that. But now I’m older then I do find it easier to sort of just be like look okay I know it itches but just don't touch it and sort of choose instead to go and get some moisturiser and rub into in.

Ele explains about the difficulties of having eczema on her hands, including after moisturising and with using soaps.

Having to touch sort of a keyboard and a mouse when I've just put moisturiser on its it is inconvenient because it just gets everywhere because I, when I moisturise I sort of have to whack a fair amount on and it’s between kind of putting a load on and just sitting there rubbing it in or putting a little bit on rubbing it in, putting a little bit more on and then rubbing it in. 

And I found that doing it gradually takes a lot more time so just for speed sake I’ll just whack a load on and rub it into my hands but then obviously you’re having to touch things and also if, so many times I’ve still not gotten used to moisturising just getting it all rubbed in and then being like I’ve got to go to the bathroom. So obviously going in, just moisturised, I have to wash my hands. And also in work it’s they tend to go for sort of cheaper soaps so going, and obviously I’m going to use soap when I’d been to the bathroom because to not would just be grim but at the same time just looking at it oh this is not going to be good. So just from that sort of point of view just having to be so careful about what I use on my skin and with washing up as well, sort of having to do washing up without marigolds the sort of yellow gloves that just turns into a three act play because, you know, they use it and then it dries out my skin. And then I've got to moisturise some more and it’s just sort of everything has to be done, anything sort of to do with water and my hands I’ve got to factor in the fact that I'm going to have to moisturise after doing it. Which does get frustrating especially when you’re trying to do something quickly and leave it and also leaving a bathroom with wet hands is never an option, ever. 

Studies, work and living away from family are all sources of stress that have affected Ele’s eczema.

Oh that’s the other thing it’s massively affected by stress so A-level’s actually because that’s when it got really bad because I was so stressed with academic work then my eczema got really, really bad and it’s, I’ve kind of not managed to get it back to the level it was at pre A-level because since then obviously I went straight to Uni and then I didn’t come home after University I went straight into the working environment so I've sort of got bills to pay, I’ve got rent, l've got all this living by myself and 300 miles away from my family. So it’s the stress kind of, stress levels haven’t really dropped so I think because it became so much more painful in those when I went into A-level’s I think that’s when it kind of took over from the cosmetic thing.

Air conditioning and temperature changes are a problem for Ele’s skin, making travel by public transport particularly uncomfortable.

I have massive issues actually with air conditioning, air conditioning is absolutely terrible for my skin and central heating, just anything that monitors the temperature in any way and my skin doesn’t like it even though my skin doesn’t like the cold it doesn’t like artificial heating either and even though it doesn’t like being too warm then it hates air conditioning [laughter] 

The air conditioning systems on those as well, it’s just, when they’re not then it tends to be really, really cold on the train or uncomfortably warm just from peopled body heat so it’s never sort of a nice temperate level on the train it’s always one extreme or the other and my skin just hates all extremes of any kind, my skin just basically hates everything so it’s it does kick off a bit with public transport. But the worse thing for it I think is air conditioning.

Ele has tried many different prescribed and shop-bought emollients for her eczema. She’s currently using one which she really likes, but worries it’ll stop being so effective.

I used to use Aqueous BP for a while and then I read online that it does actually, it’s actually linked to making it worse in a lot of cases. Obviously E45 I used for a little while and then it went straight out of the window Bio-Oil I actually discovered in the first year of Uni and that worked pretty well but that involved having oily hands like greasy hands all the time. At the moment I went through a phase of just using Dove moisturiser just using Nivea but the thing is my skins sort of takes really, really well to something and then after a while it will just decide that it doesn’t like it anymore so yeh I've been through a lot of moisturisers just because my skin likes it, loves it, takes it all in and clears up and then suddenly one day I’ll put it on and it will start burning and which is so frustrating, but a lot of the stuff I’ve found is, is pretty good is aloe vera gel like just using aloe. And at the moment I’m using something called, am I allowed to use product names.

Yes.

I’m using something called Aveeno which I bought in Boots I went, I basically went in and my hand was sort of gnarled where it was so tight, my skin was so tight and flaky and I went into the pharmacist banged my hand on the counter and was just like “What can I do about this”? And she took me over to this Aveeno stuff and it’s quite pricey it’s sort of 13 quid for 500 millilitres I think it is but it’s got porridge in it, got natural oatmeal which, you know, I’ve been doing sort of putting natural yoghurt on my hand and putting it in cold porridge like making porridge baths for my hand. Because oatmeal apparently is so good for it but yeh that’s working really, really well at the moment so I’m just sort of enjoying that while it lasts. Been using that for about three weeks now and it’s a lot better than it was but it’s still not great but it’s better than it was.

Ele took a moisturiser into her school exams but found she couldn’t really use it.

And then your skins really greasy and then the paper tends to sort of, because obviously writing left to right and moving down the page then you've got a streak of moisturiser just down the page [laughter] so trying to write over that is just sort of end up with massive gaps in texts and stuff just from, just skip to the other side of the moisturiser line. But yeh stuff like that and also taking moisturiser into exams was always a bit iffy just because, one you don’t really have time to sit and moisturise when you’re in an exam hall you’ve got an hour to write this essay, oh right yeh that’s fine just, just ignore me I’ll write it in a minute.

Ele has tried home remedies she’s read about online but is unsure about how trustworthy the advice is.

No one’s sort of come out and said I’ve found this, I put this on my skin and it works or and have that corroborated by a lot of people. So yeh I think it is more difficult with online forums and everything than they're really, really useful I mean from the point of yeh just using household items like I saw someone say that putting Manuka honey on your hand can help a lot and then other people would be just like oh no it’s sugar, sugar’s so bad for your skin and it just seems like there isn’t really a…. I think it’s because on, on the internet there is just people there aren’t many medical professionals sort of there saying no don’t do that that’s a silly idea, because of this and present the science behind it, it is just all a lot of guess work it seems.

Ele talks about the cost putting her off from trying some home remedies.

Manuka honey is so expensive and if it didn’t sort of work then it, yeh because I’ve found that sugar doesn’t really help my skin in the past then I’m sort of taking an educated guess that it wouldn’t be great for me. Sort of natural yoghurt seems to work just dunking my hand in a bowl of natural yoghurt but which feels gross, but it’s for the point if you’ve just being pure sugar then I can’t see it really working for me and also putting honey all over my hand, you know, if it didn’t work it would, because it's quite a large area that I would be covering it’s like I’ve just spent so much money on something that I'm now literally washing down the sink and it’s made everything worse.

Ele worries that others will judge her negatively for having eczema on her hands.

I mean with meeting new friends and stuff you don’t normally shake hands with them or anything like that like if you’re meeting a mate of a mate but there’s sort of the worry of oh are they grossed out by my skin like do I mention it like they might not have noticed it at all they could be just, you know, but a couple of times I have noticed people staring at it and  that gets a bit like having sort of social anxiety as well then most people will just be like oh it’s just eczema but they think like I’m disgusting oh my God they’re judging me, they’re judging me, everyone hates me [laughter] it just, just turns into sort of like an internal three act play and even though I can sort of play it off externally on the inside it’s just like I’ve just made someone feel sick. 

Ele tries to have a healthy diet, but finds there are barriers. She also doesn’t want to miss out on eating the foods she enjoys most.

So far the best thing I’ve found for it is just drinking loads of water and staying away from caffeine as well, stay away from caffeine as much as I can.

So you’ve found that to be a trigger?

Yeh I just, but working full time now, then I do kind of, my caffeine intake has gone up so much and its really showing in my skin actually but I don’t think about it, someone says “Oh do you want a cup of tea”?, it’s just like “Yeh go on then” and realise oh that’s my sixth one in the past 20 minutes [laughter] yeh it, it doesn’t help. But yeh the thing is with my skin pretty much everything is a trigger so it’s kind of I could do this whole thing where I never eat junk food and I never go out drinking and I never drink caffeine or anything like that but, but you know, that would take so much that I enjoy out because you know, I love pizza I don’t want to give pizza up I know it’s full of salt and it dehydrates you and it’s awful for you and all of that but it tastes so good. I’m not, I will take the dry skin if it means I can have a lot of those.

It’s finding a balance between.

Yeh and that’s the other thing with living by myself, I’m not very good with getting fruit and vegetables because I normally get in from work at sort of half eight at night and at that point I’m so tired I just can’t be bothered cooking properly so I’ll just grab something I’ll just eat some pasta or something like that and I definitely don’t get enough fruit and vegetables into my system and I know that that makes my skin worse, but at that point I just don’t care. So I, I should really sort that out but it’s just effort and I’m lazy [laughter].

Ele explains some of the difficulties of exercising when you have eczema.

Just going to the gym in general just because it makes me sweat, it my skin just doesn’t like it at all and also from the point of view of you know, having to wear sort of gym clothes then I’ve got sort of like three quarter lengths that I can wear but then that kind of exposes my skin and in the gym I feel kind of self-conscious anyway so I don’t want people looking at my skin as well and then I’m worried about sort of touching the equipment even though I always wipe it down afterwards and all of that, I know the gym etiquette and everything, but it just doesn’t really make a difference I still feel like people notice and they’re just like “I don’t want to go on that machine now cos she’s touched it”. which isn’t ideal but yeh and also I did pole dancing for a while which is the best exercise I’ve ever had and it was loads of fun and I want to start doing it again but a lot of the time they recommend that you put chalk on your hands like sort of dried chalk, no [laughter] I can’t go near the stuff because it dries out your hands so badly. So no I just have to deal with sort of getting sweaty and then trying to cling to a pole, a metal pole so it’s fine, its fine.

Ele feels self-conscious about her eczema and related scars when she goes out.

When I go out and stuff and you know you want to look nice want to wear a dress want to wear a heal want to look pretty and it's just like boom look at all this scarring I’ve got on my leg. And the last time I went out then as I drank throughout the evening even though I was trying to balance it out, you know, the alcohol with drinks that actually really hydrate then I could feel my skin tightening up throughout the evening where I was getting dehydrated and in the end the bottom of my leg actually looked like melted wax, it had really drawn together like it is quite severe just above my ankle which is why I wear tights and very rarely wear I’m not really wearing dresses at the moment like without tights or anything like that which is fine because it’s cold anyway. But in the summer I’m just really hoping that it doesn’t scar too badly because it’s going to look horrible if it does and I’ve got fairly severe scarring on my hand anyway, you can’t really see it because its covered in eczema at the moment but when it clears up then you can see that my, that it has scarred and it just doesn’t look nice. But yeh just from the point of view of going out and everything then it, it would be nice to not have to worry about how my legs look, you know, on top of the whole oh do I look fat in this, does my bum look big in this, does my skin look disgusting in this [laughter] it’s just that kind of thing.

Ele talks about some of the problems with sleeping, including overheating during the night and bed linen irritating her skin.

I don’t sleep well as it is but when, when it gets bad then even having the duvet, the duvet cover touching it that irritates it and it’s kind of goes but because it gets irritated when I shave my legs and obviously waxing is not an option when eczemas bad, it gets irritated when I shave my legs but if I don’t shave my legs because my legs get prickly then that catches on the duvet and that kind of makes it itch as well. So it’s this massive catch 22 of if I shave my legs then it’s going to itch but if I don’t shave my legs it’s going to itch because they’re hairy. So it does it does keep me awake a lot and a lot of, there have been many times where I've woken up and I’ve just scratched myself till I’ve bled in my sleep and then I wake up because my legs hurt or my skin hurts somewhere. so, but that’s mainly a winter thing luckily but then in summer then it gets itchy and dry because I’m sweating and because it’s so hot and warm, so I sort of sleep with just a sheet in quite early in the year just because it’s not worth having a duvet on during the summer because it gets so itchy, so.

Ele is cautious with lubricants and massage oils which might flare-up her eczema.

With sort of like sexual stuff like lube or whatever then there’s stuff that I can't use but partners have always been really understanding about that and they’ve been fine about it. I’ve never sort of got into a position with a guy where they’ve been like “What the hell is wrong with you”? but well not about that anyway [laughter] they yeh for the most part then, you know, I’ve because I’ve been very open about it if someone said what’s up with your hand well what is that then, you know, because I kind of get when, if you get into like a sexual situation with someone, if you see a sore red spot at any point on your partners body you’re gonna be a bit like.. but I’ve always just been like it’s eczema its fine it’s not contagious don’t worry, I’m not covered in herpes or anything like that. But yeh from the point of view of sort of just coupley stuff like I once had a boyfriend once give me a massage and he’d brought this special stuff for it and everything and I was just like “I’m sorry I can’t use it [laughter] I'm sorry you can’t come near me with that”.

Hair removal is a cost for Ele to consider.

I can’t use shaving creams a lot of the time and disposable razors just tear me to shreds but they’re such, this is the thing it’s so expensive like hair removal products are so expensive so I do just go for cheap disposable razors because I can’t afford to be shelling out, you know, 12 quid per time for razor stuff and  I just use conditioner really for like shaving cream and stuff, I cannot dry shave at all it’s got to be done in the shower and mainly use conditioner because a lot of shaving foams just irritate my skin.

Ele finds that household cleaning products that don’t irritate her eczema are expensive.

Because I lived on my own in second year then I could sort of buy stuff that I knew didn’t irritate my skin like I picked my soaps and thing very, very carefully whereas shared accommodation then you sort of just use what people have, what people have bought and things like that and share the costs like when it was my turn to buy stuff then I would buy stuff that I knew I could use quite easily. But other people didn’t have those constraints obviously so they’d just get the cheapest stuff and cos students, but that presented quite a few issues for me and also with shared accommodation and, you know, people get drunk stuff happens and stuff goes missing so the number of gloves that I went through was just ridiculous and it was pretty much a weekly purchase in one of my houses so yeh which was frustrating. And also going to put then on and someone else has used them and just somehow filled them with water I don’t understand how people do this, it’s like I buy these so my hands won’t get wet, just shove my hand in like clod clammy water all at the bottom it’s just, brilliant [laughter] fantastic.

Ele tries to keep the eczema on her hands covered at job interviews.

When I’ve been to job interviews and stuff I have, even though I know it shouldn't make a difference I sort of have made the effort to try and keep my hands covered as much as I can and I get very self-conscious about shaking hands with people because most people shake with the right so, and obviously that’s the hand that has, that I have the most troubles with and that’s the hand where sort of like if I grasp someone’s hand they’ll probably be able to feel the fact that my skin is often down right sharp were bits have sort of come away and it’s so dry but also going to shake hands with someone when you’re covered in moisturiser isn’t ideal so it’s just kind of like which would you prefer do you want me to stab you or get you all gooey, it’s up to you or you could just not shake hands at all but then I’d seem rude. So yeh it’s hard, it is quite hard to come across as being professional in a way because of, just because I'm very self-conscious about shaking hands and because I’m very conscious of how my skin looks and you know, you try to present yourself sort of well-dressed and everything, but you’re rocking up with either bits of skin peeling off or you’re just covered in moisturiser, it’s just doesn’t give off the most professional vibe in the world so.

Lack of sleep because of eczema has an impact on Ele the next day.

I’ve never managed it get used to operating on little sleep so I can sort of get by but I’m just a lot slower in pretty much everything and yeh it definitely affects my work, definitely I can definitely tell that I’ve had a bad night when I'm in work just because I’m so stupid when I’m sleep deprived, so stupid. And it is like, and then obviously I get worried because I'm not doing my usual standard of work and I’m going to annoy everyone and with doing just poor quality work and then I get stressed out about it and then my skin gets worse so it’s… so yeh it is just a lot of the time just thinking well I’ll just go to bed early tonight.

Ele looks at eczema forums online but doesn’t post anything herself.

No I’m a lurker I just read because a lot of the time when I’m looking for stuff like that then I'm in a position where I’m in a lot of pain, it’s very itchy I just want something like is there something in my house right now that I could put on this and make it go away or make it stop a little, you know, become less itchy and less dry. And so most of the time when I’m reading that stuff I don’t really have time to sit and wait for replies I just find what I can and go and do it.