Friends and partners can be key sources of support. Others preferred to keep their eczema to themselves. The symptoms and the possible emotional impacts of eczema could affect social life and activities shared with others.
Children at Laura’s nursery and school could do things she couldn’t with atopic eczema.
Children at Laura’s nursery and school could do things she couldn’t with atopic eczema.
Age at interview: 22
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
The first time I sort of noticed was when I sort of went to school, well nursery, and all. When you start to realise, become aware of others and what they do and what they can eat. I do remember things like going to the zoo or going to farms with my friends and family friends and they were allowed to do things like go and ride horses and things like that or, you know, I did actually used to ride horses until probably about five but then they found out I was like really allergic to them. So, but things like that…so just, you know, things that you couldn’t do just because of allergies and eczema and things like that, or things that you couldn’t eat because of it. As you get older you become more aware of that I guess.
Molly was upset that couldn’t wear make-up like her friends when she was younger.
Molly was upset that couldn’t wear make-up like her friends when she was younger.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
SHOW TEXT VERSION
PRINT TRANSCRIPT
I just wanted to do what everyone else was doing cos I was that age when it was like everyone wore the same clothes, awful clothes, and everyone was like trying make-up for the first time and everyone was kissing boys for the first time and I just wanted to be doing all of that and because I couldn’t do the make-up thing then I felt like I've been robbed of everything because obviously the make-up thing was so like linked like kissing your first boy and like going to parties and being this confident, beautiful girl. Like I felt like all of that was because of the lack of make-up and therefore the double lack of confidence, it all kind of started to kind of knock on to all the other stuff.
Talking (or not) to friends and partners about eczema
People make different decisions about whether to talk about their eczema with friends and romantic partners and what to tell them. A big factor for many was the worry that others might be nasty about their skins. Aadam was picked on at school by peers who said he had “old man’s hands” because eczema caused them to become wrinkly. People were especially wary when their eczema was on visible parts of the body, such as the face and hands, and felt embarrassed about scratching. Others, like Alice, didn’t feel the need to tell romantic partners about eczema as she thinks they would understand already.
A lot of people said their friends and partners were sources of support, but some had bad experiences. This included times when they had been teased, usually when they were young children in primary school. Upsetting experiences in the past with strangers, friends or partners could affect future decisions about telling others. Himesh used to feel very self-conscious about his eczema in front of his friends and peers at school. This used to make him nervous and shaky when talking in front of his class. Aadam thinks his peers thought he was “scary” before they got to know him.
Georgia and her friends support one another in practical and emotional ways.
Georgia and her friends support one another in practical and emotional ways.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think my friends help me deal with it so m-, deal with it well. Cos they have their own problems, so we sort of tit for tat, if you know what I mean. Like we, we swap our problems and we know how, it’s a good support system that they have there for me. They, they’ll always be there with an emergency pot of cream if I’ve run out or they’ll be willing to come with me to the doctor’s and things like that. And they’re understanding that it will stop me from doing certain things that I want to. So they’re willing to go on slightly cooler holidays without as many activities that can be done and things like that. I think my friends are my biggest support system because, as, as I said, it has such a knock-on effect on my confidence that I don’t really want to go out and participate in any of the hobbies that I like to do.
Naomi felt like she stood out at school because of her eczema and skin tone.
Naomi felt like she stood out at school because of her eczema and skin tone.
Age at interview: 17
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Well, as a kid emotionally – mm, you'd feel not…well as a kid you didn’t feel normal, you didn’t know it was normal. I was the only person in my class that had eczema, so people really didn’t understand it. And I used to be teased for it as well cos I was different.
And I was also…I was also, I think…no I wasn’t, there was another person, but there was only two people that were my skin tone as well back then. So, I was bullied for my hair, my skin, everything and it…and as a kid, you know you don’t feel…I never had that much friends, that’s why that friend I've known for thirteen years was the only one I had during that time. So, yeah that, as a kid, I can't really say cos you don’t…you're just a child, you don’t understand feelings that well, you just sort of know, you know you feel sad. I remember refusing to go to school cos I didn’t want people to stare at me and stuff like that. So, it would get quite psychological.
Aisha was hard on herself and feared being hurt by others.
Aisha was hard on herself and feared being hurt by others.
Age at interview: 21
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
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.
Lots of people worried about what they looked like and some thought teenagers were especially judgemental about appearance. Georgia’s boyfriend is very supportive but she doesn’t want to be intimate when her confidence is low. Aisha used to constantly check her appearance in mirrors. She wanted to “look presentable because I don’t want people to see that part of me”. Aisha said she thinks it’s “silly” but found it hard not to care. Most people thought others became less concerned with looks as they got older though – Vicky says she’s become more insecure about her eczema over time (see also section on emotions).
Sometimes people were asked questions about their skin – this was sometimes seen as okay, but other times could make the person feel embarrassed. Cat was asked about sunburn, especially in winter, which was a side effect from phototherapy treatment. Shams tends to keep his eczema a secret from others and puts his emollients in branded moisturiser pots to disguise what he’s using. Laura, Aadam and Hazel had all been asked blunt questions about their eczema by young children. Although comments and queries were probably out of curiosity, it can still be upsetting and make the person feel self-conscious that others have noticed their eczema. Older children and adults usually had more general knowledge about eczema and this was reassuring for many. Lizzie’s friends from home know she has eczema – they don’t avoid talking about it but tend not to because she says “it’s not a big deal”.
Others' comments and behaviours sometimes make Himesh feel self-conscious at school.
Others' comments and behaviours sometimes make Himesh feel self-conscious at school.
Age at interview: 17
Sex: Male
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT
You get like the younger groups that would like probably just say, would probably look at you and you know, whisper to their friends or I don’t know say ‘eee’ or something like that, I know that they don’t know what I’ve got but it kind of makes me feel like if they’re seeing it like that what are other people seeing, if that makes sense so I would force myself to cover up, force myself to put more moisturiser I guess just to make sure that my skin is better. And like but sometimes again like when people don’t understand when you put the creams they’ll say stuff like oh he’s got cream on his face, shiny face or whatnot you know what I mean, so yeh. But obviously those people don’t understand what I was going through.
Lots of people were open with their friends and partners about having eczema. This includes telling them about practical aspects (such as being unable to go swimming because of chlorine) and the emotional side (such as feeling self-conscious). Most found their friends and partners supportive. Alice shaves her arms to avoid the hairs irritating her eczema and has a friend who always complimented her for her skin being so smooth. Molly’s friends used to find her scratching endearing. Still, lots of people remembered times when friends and partners hadn’t fully understood about what it’s like for the person to have eczema. Being told not to scratch had sparked arguments for some with their friends and partners.
Jessica’s friends know about her vulval eczema but she doesn’t feel she can keep bringing the topic up.
Jessica’s friends know about her vulval eczema but she doesn’t feel she can keep bringing the topic up.
Age at interview: 20
Sex: Female
Age at diagnosis: 20
HIDE TEXT
PRINT TRANSCRIPT
I’m really not even a very awkward person at all. But yeah, so like, I think I told like a few of my friends back home, we like, this is fine. But they sort of, you’ll tell them and they’ll just sort of just be like, oh, that’s just some sort of like that can’t be a thing that is long running like, do you know what I mean? Like so, you’ll tell them and they’ll be like, oh, that just means she ha-kinda has to go to the GP and like people don’t really understand that actually this is quite a long term problem.
But, you’re not just gonna just like, cos if you had like, I don't know, if you had some sort of like rash on your arm, you could easily like complain about it for ages. But you aren’t gonna complain about like a group full of people, your friends that you have like an itchy vagina.
However, not everyone talked openly about having eczema with their friends or peers (such as at school). Shams and George were very concerned about what others might think about their eczema and worried it might be ‘used against’ them. Hazel and Gary have friends who know not to comment on their eczema as they don’t like attention being drawn to it.
George feels uncomfortable when his peers and friends ask about his eczema.
George feels uncomfortable when his peers and friends ask about his eczema.
Age at interview: 17
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
Well it happens quite a lot so I’m just used to it cos I know people, [sigh] like my well not my friends do as well. They point out say, “What’s that on your arm?” I’ll say, “Oh, it’s just eczema.” So I’m ok with explaining what it is but I just don’t like the fact they notice cos it, either it shows. I guess they care because they’re my friends but I was wondering how bad it would be for them to have to notice or point it out. And I kind of overanalyse the situation. Cos I’m just that kind of person and then it, just, yeah, it is quite upsetting sometimes but not to the point of I wouldn’t go out or see, not see them cos I know they’re not trying to offend me. It’s just, they’re just being curious which is fair enough.
I’ve noticed with lots of my male friends that they often-, they’re less sensitive. So they would take the mick out of something, other people, something else. And I would, I just don’t wanna be at the end of their joke like that. But I’m sure they’d respect, respect me but sometimes I just think they wouldn’t and I just don’t want that at all.
Shams has fallen out with friends over hurtful comments they’ve made.
Shams has fallen out with friends over hurtful comments they’ve made.
Age at interview: 18
Sex: Male
Age at diagnosis: 7
HIDE TEXT
PRINT TRANSCRIPT
I've had a lot of issues with friends and I’ve had a lot of conflicts with friends where they make a comment about my eczema. I remember one of them was a friend when I was younger, he called me 'Itchy and Scratchy' cos of a TV show from The Simpsons or something, and during that time I remember I was really sort of, not ill that day, but my eczema was really bad that day and I was in a depressed mood.
And I remember turning around and getting into a sort of really bad fight with him that day. Had to be broken up for other friends and since then we've never talked. And a lot of my friends, we've haven’t always had physical conflicts, but after a while I stray away from them; I distance myself away from them.
Aisha didn’t talk to friends about her eczema because she didn’t want to draw attention to it.
Aisha didn’t talk to friends about her eczema because she didn’t want to draw attention to it.
Age at interview: 21
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
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.
Meeting new people
One thing that could cause anxiety was meeting new people. Gary says he doesn’t feel confident enough to approach young women he’s attracted to when his eczema is flared-up. Aman was put off meeting new people when he felt most self-conscious. Georgia finds it hard to make eye contact and doesn’t like others looking at her.
Cat finds it’s easier to cope with eczema in her social life nowadays than when she was at university.
Cat finds it’s easier to cope with eczema in her social life nowadays than when she was at university.
Age at interview: 24
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
At uni you spend a lot of time in the evenings going out and getting sort of hot and sweaty, and sort of nightclubs and things like that, which is not very sort of, like cos I think it was quite difficult in the first couple of years especially when that’s a lot of socialising happens in the first year, first year or two at university. Which it is quite difficult to sort of do that but you just, you wanna sort of make friends and things like that, so you just sort of have to grin and bear it and skip… instead [laughs]. No, that’s definitely not the thing to do [laughs].
[Laughs]
So yeah so, yeah I think yeah, it did impact a bit on that, but yeah by the time I'd sort of sorted it out I'd moved on with my social life, so you know, only go out once a week or something, so it was sort of easier to cope with and just sort of things like bars and pubs sort of, once you sort of move, a bit older, bit more mature, and that’s the sort of socialising you do. It's a bit easier to sort of cope with those sort of things so.
Aisha worries about people looking at her eczema and scars.
Aisha worries about people looking at her eczema and scars.
Age at interview: 21
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
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.
Some people found they worried less about the appearance of their eczema when meeting new people as they got older. Abid found starting college was good because “you have that opportunity to kind of like make friends with whoever you wish to whereas at school you’re a little bit more limited”.
Spending time with romantic partners and friends
Having eczema can have physical and emotional impacts on spending time with others (see also ‘socialising’). Physical aspects include when activities with friends and partners might trigger an eczema flare-up or be too painful. Himesh tries to persuade his friends to play sports with him which don’t require as much contact with grass. Stress is a major trigger for Georgia and an argument with a friend can cause a flare-up. Laura has declined food offers before – she doesn’t want to seem rude but knows it would have triggered her eczema. Physical activity like running around or bowling can be too much for Shams when his eczema is painful. Ele and Anissa found that holding hands with their partners was sometimes painful. Georgia worries about leaving skin flakes on other people’s clothing when she hugs them. Sleepovers can be a concern for different reasons, including worry about whether the washing powder used on the bedding might be a trigger (see also sleep).
Molly finds that the change in hormones from sex, as well as contraceptives and her periods, flare-up her eczema.
Molly finds that the change in hormones from sex, as well as contraceptives and her periods, flare-up her eczema.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
SHOW TEXT VERSION
PRINT TRANSCRIPT
I’ll always come back with like worse eczema than when I started out at the weekend and I know that’s because of sex and like yeh it is definitely linked and I think that’s why the doctor, the smart doctor, didn’t let him come in because he was wanting to talk about that. And I think it’s the hormones, I think when my hormones go all over the shop which is the same thing from periods stuff, as soon as my hormones are kind of like jangled – my skin reacts to it.
It was so pivotal in my decision to get the coil cos I went to the doctor here and was like “I’m so bored with the pill, it’s so bad for my eczema” and then just like “I need an alternative” and she was like “Well, the coil’s really great – a) cos there’s an non-hormonal one and b) because the hormonal one is only the equivalent of half a pill a week, so you’re taking six and a half less pills than you would be on the pill”. So I was like “That sounds great” and it has been great, it really has been fine with my eczema, thank God.
Ele is cautious with lubricants and massage oils which might flare-up her eczema.
Ele is cautious with lubricants and massage oils which might flare-up her eczema.
Age at interview: 22
Sex: Female
Age at diagnosis: 2
SHOW TEXT VERSION
PRINT TRANSCRIPT
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”.
Partners and friends can help the person with eczema avoid triggers, provide a distraction away from the eczema symptoms and give emotional support. When his eczema is bad, Gary likes having friends over to watch films and hang out. Naomi feels less itchy and more upbeat when she’s with friends. Laura appreciated it when her friends reminded her not to scratch. Other people preferred when friends and partners didn’t comment on this as it could be a source of arguments. Even if said in a well-meaning way, being told “don’t scratch” can feel like the other person doesn’t understand. Ele plans to eat healthier, which she hopes will help her eczema, when she moves in with her boyfriend.
Feeling self-conscious about eczema can be a huge barrier to socialising with friends and partners. Naomi will sometimes “shut myself in the house” but doesn’t “want my skin to get in the way of that, of ruining my teenagehood”. Molly says she sometimes overused steroid cream in the hope of her eczema healing quicker so she could feel comfortable seeing friends and socialising. Katie-Lauren tries not to let eczema stop her from doing things but sometimes goes home early on evenings out. Feeling self-conscious about her skin and the smell of emollients stops Georgia from being intimate with her boyfriend.
Many said they disliked having photographs taken and seeing them on social media. Sometimes they wanted to see the photo straight away and, if they didn’t like it, would ask for it to be deleted. Some people had tactics to avoid photographs – such as offering to take the group picture, moving suddenly and hiding behind their clothes, hair or another person.
Katie-Lauren’s boyfriend sometimes helps her moisturise.
Katie-Lauren’s boyfriend sometimes helps her moisturise.
Age at interview: 19
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
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.
Abid worried about romantic partners responding badly to his eczema.
Abid worried about romantic partners responding badly to his eczema.
Age at interview: 24
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
In terms of like being in relationships or whatever like it’s, it’s something that surprisingly when I was actually first in a relationship no comment was ever made about… and I was like “wow okay maybe this isn’t as weird or as I thought it would be”. I thought it was gonna be like, you know like a scream and a run away kind of thing but no, maybe cos it’s qui-, a lot less than it used to be maybe. So yeah you, that’s, that’s a balance really you kind of know when you’re in an okay relationship if, if that happens.
So, so yeah. But of course you want to look your best and you want someone else to appreciate you on a, on a physical level as well. So yeah it’s it would have caused a bit more discomfort if I, if I if it was a lot more excessive but I guess people find ways around that I guess.
Molly disliked photos being taken of her and having them posted online.
Molly disliked photos being taken of her and having them posted online.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
HIDE TEXT
PRINT TRANSCRIPT
I remember at the time dreading, absolutely dreading going to a party for the sake of the photos that would go up the next day because I knew that like even if I’d covered up my eczema, the flash of a camera would bring it all out and I hated putting make-up, I’m not really a make-up-y girl and I hated putting make-up on anyway and I never actually put make-up on top of my eczema when it was that bad because it would kind of make it worse, it would almost draw attention to it because the stuff I couldn’t cover up would look more aggressive. And so these photos would go up of me and I can like picture them in my head now and I just remember being so mortified and like I’m smiling and I’m with my friends and like they’re still my friends now and whatever so they are, were all like really easy people who knew about my eczema and really it didn’t faze them – but I was just so aware of it and because it was going on this public space and I was just like, it was just horrible.
Loads of removing tags and photos, loads of emailing people like “Please take that photo down”. And like desperately like cos at that age everyone is changing their profile photo like every week and just being like ‘oh my profile photo from summer’ when my eczema wasn’t good, ‘when my eczema was fine’.
Friends who also have eczema
Hearing about other's experiences with eczema, including the emotional impacts, was appreciated (see also ‘sources of information and support about eczema’). Nobody mentioned their romantic partners having eczema, but most had at least one friend with it. Sarah has lots of friends with eczema who she talks to and shares the “funny side” with. She sometimes drops it into conversation that she had eczema to find out if anyone else also has it. Swapping experiences on using different prescribed and shop-bought emollients was valued too. Friends with eczema can also be a source of inspiration, as for Aisha who knows someone with a confident “gung-ho” attitude about others seeing her skin. Sarah says that having friends with eczema helped her realise that hers is often not as noticeable to others as she’d previously assumed.
Talking to friends with eczema is an emotional and practical source of support for Sarah.
Talking to friends with eczema is an emotional and practical source of support for Sarah.
Age at interview: 23
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I always like mention it to, just to see if anyone else has it. But sometimes you think, like you’d never think somebody would have it. Cos you think that they’re such a like beautiful person with like the most amazing skin. And then they have it on like a part of their body that you’d never even see. So that’s quite interesting. And then you just like, we always talk about what products we’re using, what’s helping. And it was actually, my friend’s been seeing a dermatologist like privately because she couldn’t see one on the NHS. And it’s through like things that her dermatologist told her that these-, she’s then told me and I’ve then talked to my GP about. It’s like kind of managed to get like different treatments and different like creams and stuff. Which is frustrating cos you think ‘why couldn’t the GP just tell me about it in the first place?’ But, yeah, so that information kind of threads through. So it’s quite good to talk about it to different people and try different creams and different like treatments. Like hemp oil. One of my friends takes hemp oil and she’s found that’s been really useful. So that’s been something that I’ve been like trying. And, yeah, we swap it. And then also like when it’s bad you’re like, you can just say, “Oh, my eczema’s so bad,” then they’ll text you back like, “Oh, me too, I’m so itchy.”
For some, university was a key place where people met others with eczema. They said this was in contrast to school where having eczema might be singled out more.
Katie-Lauren was nervous about moving to university but has made friends with others who also have eczema.
Katie-Lauren was nervous about moving to university but has made friends with others who also have eczema.
Age at interview: 19
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
It was helpful when Laura met other people with eczema at university.
It was helpful when Laura met other people with eczema at university.
Age at interview: 22
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Growing up I didn’t really know anyone with eczema, which it probably would be beneficial to know someone with a similar condition I think if because then, at least you can talk about it, whereas I didn’t really ever, there was not really, apart from my Dad and my brother, who have very minor, I didn’t really know anyone that had it. So, I think at Uni, one of my friends, she has it on her hands as well; it was interesting to hear her side of things. And obviously she, obviously sort of mentioned it, we both talked about. I think I might have talked about it first. Whereas other people often just say either "Are your hands OK?" or, "Does that hurt?" or they’ll say, "What's that?" and some people say, which my friend at Uni and I always, are just so like, "Ergh yes we know." Basically people often say, "You need to put some moisturiser on that." It's like, "Yes I know” [laughs] obviously.
Some people knew of friends and peers who had eczema but they hadn’t ever talked to them about it. Some worried that starting up a conversation would cause offense to the other person, but Cat said she would be happy to answer someone’s questions if they had any.
Copyright © 2024 University of Oxford. All rights reserved.
