We asked 24 young people about how their eczema looks and feels. The main symptoms/features they described were:
- itching and scratching
- flare-ups
- the way their skin looked (dry, sore)
- scars and lasting marks
Itching and scratching
Eczema made people’s skins very itchy. This could make it hard to concentrate or sit still. The itching could be intense, constant and uncontrollable. People described their skin as “twitching”, “throbbing”, “stinging” or like having “ants crawling” on it. Some of these sensations were so intense that it made the person want to “squeeze” or “dig out” the itch. Scratching could give relief but, at the same time, people knew that it could make the skin very sore and broken which risked infections and scarring.
Molly scratches her eczema in her sleep without meaning to. It has woken up Molly and her roommates before.
Molly scratches her eczema in her sleep without meaning to. It has woken up Molly and her roommates before.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
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At school, when I was at boarding school, I shared a room with a friend and I used to wake her up every night scratching my skin in my sleep so when I was, this is a really bad example today, they usually, my nails when my eczema’s bad – the first thing I do is cut my nails down as far as I can so that I physically cannot scratch and even if I do its just flesh on flesh. So my friend used to make me sleep in gloves just because for whatever reason, even having cut my nails, I’d find a way to wake her up from all the scratching because that's how raw my skin was so how loud the noise was. Really horrible for her but so she’d tie these gloves to my hands, so horrible to sleep in, so that I couldn’t wake her up and also so I couldn’t harm myself cos I’d wake up and just red raw skin bleeding sometimes just from desperately trying to like ease the pain. But I’d never wake myself up in those instances; I have woken myself up before scratching.
Aisha describes the different kinds of itchiness she experiences with eczema.
Aisha describes the different kinds of itchiness she experiences with eczema.
Age at interview: 21
Sex: Female
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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.
People tried to avoid scratching with a number of strategies.
- sitting on their hands
- putting water (hot or cold/ice) on their skin
- “vigorously” rubbing in moisturiser
- keeping their nails short
- using calamine lotion
- wearing mittens or cotton gloves
- finding distractions like playing video games
- trying to “stop” the itch by smacking, rubbing or pinching the skin as they hoped this would do less damage than scratching
- avoiding scratching by going out in public or spending time with other people who might find it “impolite”
Being told not to scratch by other people could be frustrating. Although it was often said in a well-meaning way, it could feel like others didn’t understand how intense the itchiness is.
Georgia talks about how it can be difficult to cope with itchiness, especially in intimate areas like near the bum, and what other people think about her scratching.
Georgia talks about how it can be difficult to cope with itchiness, especially in intimate areas like near the bum, and what other people think about her scratching.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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It’s like if it’s in a really intimate place, like it sounds a bit disgusting, but I get it right under my bum cheek, like in the crease where your bum meets, meets your thigh. And if I’m in public I can’t just start scratching it, cos I’ll look like I’m trying to scratch my, my bum. And I don’t want people to be like, “What’s she doing? Why is she scratching her bum?” But it’s so hard. So I have to like go to the toilet and just be like arr because of the relief. And I try not to do it if I’m with my friends cos I know they’ll notice and I know they’ll be like, “Stop scratching. Stop it, stop it.” And sometimes people just telling you to stop can make you want to do it more. It, it’s one of those things though, isn’t it? You tell somebody not to do something and off they go and do it. And it almost starts off like a trigger reaction sometimes. So if I’ve got a scra-, like an itch on my leg, I’ll slowly make my, my way up my leg and up my body and then back down the other one.
Katie-Lauren finds that she’s more likely to scratch if she stays at home when she gets in from university lectures.
Katie-Lauren finds that she’s more likely to scratch if she stays at home when she gets in from university lectures.
Age at interview: 19
Sex: Female
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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.
Some people said it became easier for them to control scratching as they got older and “learnt not to.” Abid has been told that he scratched as a baby but he doesn’t remember this and thinks he learnt to control it from a young age.
Even though his eczema is still itchy, Abid is able to control his scratching.
Even though his eczema is still itchy, Abid is able to control his scratching.
Age at interview: 24
Sex: Male
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throughout my entire life I’ve had eczema since I was young and when I was a baby apparently my mum told me all I used to do was scratch it. Which is interesting because as long as I can remember remembering if that makes sense I never did scratch it and doctors never told me it should, you know, that and I should be scratching and stuff like that so or n-not to not scratch it if that makes sense.
in my situation it never caused me to itch, I don’t know whether or not that was down to discipline or whether or not I was, I was never told it was to be itchy.
There is a lot of discipline involved like because back where I’m from in Bangladesh like if you get bitten my a mosquito it’s the worst thing, you could be constantly scratching it and after two weeks you get bit and you kind of like deal with it and its interesting how that journey happens.
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.
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.
Age at interview: 22
Sex: Female
Age at diagnosis: 2
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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.
‘Flare-ups’
‘Flare-ups’ are when the eczema changes colour (becoming lighter or darker and, in pale skins, redder) or feel more itchy. This could be caused by an irritant, like itchy fabric, or another trigger – including allergies (see: ‘What are the different types of eczema?’, ‘What causes eczema?’ and ‘Eczema triggers: what can make eczema worse?). For example, Molly described how contact with make-up removers can “feel like my eczema awakening and being like ‘oh hello,’ like coming out”. People may not know what caused a flare-up and it could feel like being “back at square one”, despite all the hard work put into looking after their skins.
Himesh talks about the frustration of eczema ‘flare-ups’ and undoing all the work he’d put into looking after his skin.
Himesh talks about the frustration of eczema ‘flare-ups’ and undoing all the work he’d put into looking after his skin.
Age at interview: 17
Sex: Male
Age at diagnosis: 10
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Could you tell me a bit about what it’s like when your skin does flare up?
Yeh it’s a bit annoying ‘cos I get to a stage where my skins at a good point which I see as a good point basically and then all of a sudden I’ll have this infection which just makes everything pointless, I have to start again, if that makes sense. Yeh it’s not really good having infections for people with eczema it’s just really annoying ‘cos you have to start again. Once you’re at a good point of your skin, you have to, you know, it goes to waste in a way, so yeh.
Do you get sort of a sense that a flare up is on its way or does it just come out of the blue?
Well now I can tell like, when like seasons change and weather changes I can tell that my skins going to be bad but I can control it now ‘cos I’m at that age where I can understand how to control it. So it’ll probably flare up for a week or just go bad for a week because of the weather change or season change then after that it’s alright, so yeh.
University life, especially drinking alcohol, can cause Molly’s eczema to flare-up.
University life, especially drinking alcohol, can cause Molly’s eczema to flare-up.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
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For example I had a glass of wine last night, I woke up and my eczema’s like exactly the same but if I went out and got drunk with friends and was in a night club sweating, dancing, outside smoking and then got into bed, fell asleep for a couple of hours, God knows how many hours, anyway – wake up knackered obviously, hung over obviously my skin literally will be red and fiery but usually here [points to body part off screen – to arms?] which is really weird, that’s where I kind of get it from alcohol. And so that’s kind of consistently bad now I’m a student [laughs]. But because it’s kind of there, people don’t think its eczema, people think it’s a rash or I’m really contagious [laughs] and avoid me, they don’t really. And so yeh I know when I go out on a night out that I will wake up with a rash if I’ve had excesses amounts of drink. But kind of on a day-to-day basis, its fine and it never flares up so much. I mean I say that, if I was doing like a week of loads of partying I’d bring, and if I wasn’t at home, I'd being loads and loads of cream and I’d probably be putting on the steroid cream before it was even flared up, knowing that the alcohol was going to kick it all off.
Skin texture/feel and look
Eczema can change the look and feel of the skin. Some people described their eczema as looking like rashes, which might be blotchy, bumpy or raised. This can look red in pale skins or dark and dusty in other skin tones. It might also look inflamed and parts of the body, such as around the eyelids, can become swollen. The texture of the skin may become very dry and feel rough “like sandpaper” or tight. Skin can be prone to cracking or splitting. For Katie-Lauren, bending her wrist would cause the skin to tear when her eczema was severe. When the skin broke, it would be sore and stand out with blisters, blood, oozing and scabs. For some, this part of eczema was incredibly painful and the agony of having open wounds makes it difficult to concentrate.
Laura talks about the feel of eczema when the skin is broken.
Laura talks about the feel of eczema when the skin is broken.
Age at interview: 22
Sex: Female
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What makes me laugh is when people get cuts, like friends, they have a cut on their hand and they're like, and they’ll moan about it and they’ll be like, "Oh my cut," and then keep bringing it up and like, "Oh I hurt my cut," and like, "Look." I have cuts on my hands all the time; [laughs] obviously I don’t say it but inside you're just thinking, 'I have cuts on my hands all the time but I don’t', just get on with it. Yeh, they flare up a lot when I have cuts and it is quite annoying that, because it's like, well you still have to use your hands but you’ve equally got to be aware of the cut because if you get anything into it, it won't just affect the cut but it will affect the sort of surrounding area of your hands.
Like sometimes they're just very, the worse, when they're really bad they’ll have cuts - sores almost - very, very inflamed, like very red. Like even like an extra sort of layer of skin cos it's so like so, they swell. And then also you get like…, you know like when people have spots, like pus-y spots – you get those as well.
Skin flaking or peeling can be part of eczema. Gary didn’t mind this though, because he thought that it was a good sign that “normal” skin was developing underneath. Georgia felt self-conscious about shedding skin and worries about leaving flakes behind when she hugs her friends and boyfriend.
Gary explains how he sees his eczema symptoms relating to different stages of having the skin condition.
Gary explains how he sees his eczema symptoms relating to different stages of having the skin condition.
Age at interview: 23
Sex: Male
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I have like different kind of eczema; it has like different kind of stages. For example, if I eat something bad then the first one is always I start having this small red dots all over – those are the scratchy ones – and then it starts bleeding and I stop scratching myself daytime, but so often I just wake up and I just find like a huge scar on my arm because I was scratching myself in the night, and that’s when I cannot stop obviously. And so first I have these small dots. If I feel bad or if I eat something bad; then I have the whole wounds. And then I have like the drying off part. The drying off part is, that one looks one of the worst but that one – I can live with that one. It doesn’t really feel bad at all and that’s why it's easier to handle.
Scars and lasting marks
Some people also found that there were lasting impacts on their skin, like scars, even after their eczema had cleared. This made some people feel self-conscious, but others weren’t too concerned (see also section on emotions). Changes to the skin after eczema didn’t always look like typical scars and could come in a variety of forms. Areas of skin can be a different colour (redder, paler or darker), shiny, raised, “hardened” or patterned with patches. Scarring really affected Hazel, Vicky and Sarah who had all developed chickenpox which interacted with their eczema. Other people hadn’t noticed any long-lasting changes left by eczema or found that they could only see a difference if, for example, they had been tanning.
Shams says that the scars left by eczema are often visible and that other people notice them.
Shams says that the scars left by eczema are often visible and that other people notice them.
Age at interview: 18
Sex: Male
Age at diagnosis: 7
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I have a sort of quite a few significant scars on my body. Sort of pa-, some don’t look like scars; some just look like sort of black head spots, just black p-patches on my skin where eczema was there, where I've scratched away previously. Main example is my sort of wrists here, and they’ve just got black marks on them, and even so, even so so-and-so areas don’t have eczema, I still cover up because of the scars. The scars are still noticeable; the sort of skin discolouration; the skin sort of largely differs from my normal skin tone – one area will be sort of brown; the other area will be really dark brown, noticeably dark brown where people would sort of question what, “what happened there, how did y-…that happen? Or do you have some sort of…” they’d question if I have some sort of other skin disease. I don’t know, I just have hec-eczema. They’d question, “are you sure, this looks like something else? I’d be like “no, it's just scarring…it's how it is”.
Developing chickenpox combined with Hazel’s eczema and left her with some scars.
Developing chickenpox combined with Hazel’s eczema and left her with some scars.
Age at interview: 21
Sex: Female
Age at diagnosis: 3
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Could you say a bit more about the chickenpox and sort of what that was like, sort of a bit more about it, if possible?
Yeah. So, I didn’t catch it when I was like a young child; I got it when I was 13 so, it totally knocked me out for about two weeks which was quite hard like being in school, having to have that time away. And then like the scarring was quite bad because my skin was already quite sensitive. So, it's something that I'm quite like… it's hard to kind of live with because, to me they're quite visible but to everybody else it might not necessarily be a thing. But it did take quite a long time after that to kind of adjust to living with more sensitive skin because it was such a, cos I was older, it took longer to recover. But thankfully I did recover, you know it is a really good thing but, yeah I think and that’s because it's permanent scarring, it's something that I now have to live with. But, yeah just take each day as it comes with that.
Molly worried about what others would think if they saw the marks visible on her skin after tanning a few summers ago.
Molly worried about what others would think if they saw the marks visible on her skin after tanning a few summers ago.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
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There was one year when my eczema was really bad and then it scarred that summer and then the following summer I was so nervous about getting tanned and had made such a conscious effort all year not to scratch because it was almost like because you couldn’t see the eczema, the scars were really horrible because no one, everyone, I kind of felt like everyone would’ve been guessing what they were because they were literally just blotchy skin. And I hated it, I was, that was as, I was as insecure about the scars as I was when the eczema was visible. and the scars have gone, so now I do get scars here [points off screen] but like I’ve always, always, always had scars there so I’m used to that and that’s never, I’ve kind of grown like to kind of be unfazed by that. But the scars on my face and my chest I hated, but I don’t get those anymore.
Aisha describes the changes left to her skin even after her eczema cleared.
Aisha describes the changes left to her skin even after her eczema cleared.
Age at interview: 21
Sex: Female
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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.
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