People spoke about getting information and support about acne through many different sources including leaflets, the internet, social media, speaking to friends and family and speaking to their GP or dermatologist. Getting information or support could be something people did regularly or occasionally.
Molly compares different sources of information. She finds internet forums most useful.
Molly compares different sources of information. She finds internet forums most useful.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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The newspaper stuff’s kind of been like with the Roaccutane (isotretinoin) that was just stuff that like cropped up I didn’t necessarily go looking for that but it was kind of in a few headlines and stuff, that’s kind of where I saw that. But I’ve, I mean I’ve looked on like forums and stuff, there’s quite a lot of information there. Like I kind of feel like the-there are obviously like information websites, like NHS kind of set up or whatever. But the thing is I’ve tended to go towards it generally being like more experience-based so like I mean forums are good for that in the sense that we have a lot of people giving different perspectives of medication. And also I feel like sometimes their like account on the medication is a bit more candid than on other websites, so that’s kind of where I’ve gone to seek advice out.
I mean I’ve never posted before except for recently where I’m part of like this Facebook group which is like a self-care group, and I posted about if anybody had used Roaccutane cos that’s been the only one where I’ve really felt like I needed more answers like generally things have been quite like well set out. And I got, y-you know, some really helpful responses, like really different experiences which is always really useful because I wouldn't wanna, I-I’d rather go into something like aware of kind of all experiences rather than kind of having like maybe like a party line or whatever.
A lot of people who had friends with acne talked about sharing information on treatments and causes. But some didn’t have friends with acne or didn’t feel comfortable talking to others about it.
Fatima and her friends all shared information about squeezing acne spots.
Fatima and her friends all shared information about squeezing acne spots.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Could you say a bit more about what you mentioned a moment ago about not being able to squeeze out the spots?
Oh yeah. Because like my friend told me that like yeah because like basically like when we were teenagers we usually talked about this stuff ‘cos like people experience the same thing and then like we all share information about it. And yeah my friends told me that you’re not able to squeeze out the spots because they leave scars on it. And then your, like your skin will be like, like dented or something like that. Yeah and they also say like there’s like laser treatment for acne and stuff. Yeah. I don’t know much about it but I have heard of it and I have heard that my friend wants to go there so.
Will found it useful talking to friends about different treatments.
Will found it useful talking to friends about different treatments.
Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I had a few friends who were going through that and their skin was like really and actually much worse than, you know, when I had acne and as I say my housemate at the moment, you know, he, his skin is really bad and he, you know, he, I think my sort of friends who had that, I kind of, when they, when the sort of conversation turns to that sort of, I know that sounds weird talking about skin or whatever, you know, it doesn’t happen often, but when the kind of conversation kind of turned towards that and they’d be like, “’Oh”, you know, as I say, as I mentioned earlier, “Oh I’m going on this new medication thing, oh it’s going to be rubbish”. Kind of thing, I’d be like, “Oh, you know, what’s that for”? You know, probably knowing full well that it would be for their skin kind of thing and then I try and like angle on the conversation, you know, “I, oh, you know, I had really bad skin problems or whatever and then I took Roaccutane (isotretinoin), you know, like have you heard of it?” Kind of thing and they’d be like, “Oh, arr, actually yeah, you know, that’s what I’m on”. Or, you know, “No, I’m on this other kind of thing”. And then, like as I say, the kind of conversation would turn towards that side so.
Because acne was common during the early teenage years, a few people felt strongly that more information about acne was needed at school.
Types of information
The type of information people wanted varied, from scientific information about acne or acne treatments, to other people’s stories. Most people wanted general information (examples, facts, advice) about the different products available for acne and “tips on how to deal with it”. But a few people had particular concerns that led them to search for information such as make-up tips for covering up acne or reviews of good GPs and dermatologists to see. Alexandra had acne on her back and wanted information about bras with alternatively placed straps so that she could be more comfortable.
What people often valued most was hearing other people’s personal experiences. For example, it could be useful to hear about what treatments had worked for others, how their skin had reacted to different creams, and even whether people regretted taking or not taking particular treatment options such as isotretinoin and the contraceptive pill.
Alexandra found it most helpful seeing pictures of other people’s back acne so she could compare it to her own acne.
Alexandra found it most helpful seeing pictures of other people’s back acne so she could compare it to her own acne.
Age at interview: 22
Sex: Female
Age at diagnosis: 13
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I have looked at some pictures before about acne, making sure, if, in what kind, I wanted to know in kind of what category I was basically, if I had like severe, very severe acne or if there were, if there were people that had even worse spots than I had. And I think I was kind of in the middle, so I wasn’t the worst case. I’ve seen pictures of people whose entire backs are covered and then I felt very sorry for them and, yeah, those were very bad pictures to see. And then, strangely enough, that makes me feel a little bit less, you know, “oh wow, I have so many spots”, if you, you know, what there is out there. I didn’t really, I’d get, I, from the skin treatment I did get some leaflets about acne itself, a little bit more but I didn’t really look into it that much myself, no.
Shu En looked online about acne causes. She found the medical diagrams helpful, but didn’t like seeing photographs of other people’s skin.
Shu En looked online about acne causes. She found the medical diagrams helpful, but didn’t like seeing photographs of other people’s skin.
Age at interview: 19
Sex: Female
Age at diagnosis: 9
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I think from what I understand from Google [laughs] I think it’s basically like when, when your oil glands swell up and like they overproduce oil, because it’s a bacterial infection on the face, yeah, on the oil. Yeah.
Could you tell me a bit more about doing research on acne, whether it’s online and using Google?
Yeah. The, the pictures are quite scary [laughs]. Yeah. But it’s quite straightforward, quite straightforward disease, I suppose, illness, disease, affliction, don’t know.
So the photographs, the images on Google, is something that you’ve looked at before?
Yeah and like the like scientific images of like the hair of the oil glands and stuff, yeah.
With the many sources of information available to them (online, through GPs and from friends and family), most people found relevant advice. But the wide variety of information could make it hard to get a clear answer, and some people got conflicting information or advice. For example, Tom had heard from friends that diet was an important contributing factor to acne but his GP told him it was not the case. Devan mentioned to his GP things he had read on the NHS website about acne and his doctor told him that he shouldn’t look online about acne.
For Rachael, it was hard to get a clear idea of the balance of views about people’s experiences of isotretinoin.
For Rachael, it was hard to get a clear idea of the balance of views about people’s experiences of isotretinoin.
Age at interview: 18
Sex: Female
Age at diagnosis: 16
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When you were looking online, was there anything that you were searching for that you weren't really able to find or you weren't coming across certain information?
I think, I guess people's experiences, like in a more kind of organised and explicit way maybe. I think especially for Roaccutane (isotretinoin) it would have been good to have like who's like, who's experienced this, who's experienced this out of the amount of people that have done it or, who hasn’t had this and had a really positive experience like in one kind of place, cos I sort of, I'd find one article which was terrible and then maybe just one person saying, "Oh yeah, I went on it." I just find it a bit unclear, like very mixed and yeh.
And was that something that you were able to speak to your dermatologist about to sort of find out, in their experience, how many people or?
I did ask but I think, cos they didn’t really know as well, I think that, they said what their experiences were and they said like obviously some people might experience this and some people won't but I don’t feel that necessarily made me feel any clearer so.
Yeh. So you wanted more like hard sort of statistics?
Yeah I just wanted to like… kind of wanted to talk to like a whole crowd of people that had been through it and this half could say like I experienced this and… whereas just speaking to one person sometimes is not very helpful cos it's quite limited.
There were also gaps in the information available. Both Hester and Devan found a lot of the information they were looking for on US websites and it was hard to tell whether the information about different skincare products and support was relevant for people in the UK. Although he thought the NHS webpages were helpful, Devan said they were not targeted at young people. He felt there should have been more advice online for young people in the UK about where to go for support.
While there is a lot of information about acne for teenage skin, Deborah thinks there is not enough about acne for adult skin.
While there is a lot of information about acne for teenage skin, Deborah thinks there is not enough about acne for adult skin.
Age at interview: 25
Sex: Female
Age at diagnosis: 12
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I think there's a fair smattering of adult acne things out there, but it's definitely less than the teenage acne sort of things that you find. So sometimes they're not appropriate for my skin, sometimes they're things - just repeating things I know. And they're just implying that it's a phase that you'll go through and you'll get rid of it afterwards. Which, you know, this is a really long phase, [laugh] if it is. So I think there needs to be a bit more recognition that there are adults with acne out there. And what, what your GP can do. What your options are. What treatments there are out there. And how best to care for your skin. Cos it's, it's very different to teenage skin. So I think, I think that would be - it's not necessarily a gap, but it's under-represented, I'm sure.
Using the internet and social media for information
Most people had used the internet at some point to look for information about acne and treatments for acne. For example, people mentioned using:
• NHS website
• Google search
• Yahoo answers
• Youtube
• discussion forums
• Facebook
• Instagram
• blogs
People used search engines like Google to type in their questions, or looked for specific articles and information about drugs and creams. Fatima had been given skincare products by a private clinic in another country and used Google to research what the products were for, how they worked on the skin and whether there were cheaper alternatives containing the same ingredients on the market. Chris used the internet to see if anything new had come up in terms of remedies or prevention. Eli and Deborah followed people on YouTube with acne who posted video tutorials and photos showing how to put on make-up to cover up acne.
Harriet used the internet a lot and became “a self-confessed skin expert”.
Harriet used the internet a lot and became “a self-confessed skin expert”.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Things like Yahoo Answers. And you just sort of google what foods are bad for your skin or just like constantly on little forums looking at the best like face washes and moisturisers. And then you start, you go to a supermarket with your mum and you’re like, “Oh, that one’s oil free. I’ll get that one. That’ll be good for my skin. And that one’s got, you know, soap free” or anything like that. And you slowly start to, you know, one thing works and it, or it doesn’t work. And then you google that and you’re like, “Why, why did that work and something else didn’t?” So it’s just like detective work, trying to figure out what works for you, I guess.
I was just comple-, like constantly on Google, like googling what foods are bad, what you shouldn’t drink or do. And like I mostly had my hair like tied up in a bun so it was all out of my face. I changed my pillowcase every single night. Like I’m an absolute skin expert now [laughs]. Well, a self-confessed skin expert.
[Laughs]
But, yeah, so I did, I did sort of read that you should, like dairy is, I read one, in one place that nothing you eat will affect it, but then I found that sometimes it does. So I wouldn’t eat, like if I eat eggs or cream or things like that, then it tends to, or it tended to get quite bad. So I’d avoid things like that, yeah.
Abbie found lots of interesting blogs and videos online about covering up acne and treating it.
Abbie found lots of interesting blogs and videos online about covering up acne and treating it.
Age at interview: 17
Sex: Female
Age at diagnosis: 13
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Yeah, I, like whenever you google ‘how to get rid of acne’ or whatever then lots of things like that come up. And I, there was lots of YouTube videos as well that I, I’d watched before. And there was oh like, do you know Tumblr, the website?
Yes.
There was like lots of blogs on there of like, and it had lots of links to different kind of ways of coping with acne. Like ways you can cover it up like with make-up and stuff. And ways you can like make it not so red and things like that. So that was really helpful.
Could you tell me like an example of something that you found online that you found useful?
Yeah, so I found, like there was a way to make your skin not look so greasy, like. Cos with acne it kind of, it sometimes makes you look really shiny and really red. And there was this blog on Tumblr that basically told, explained that if you used this make-up that was like tinted, I think it was tinted green or something, then it would like cancel out the red. So that was really helpful cos I got some of that. And, yeah, that was a good thing.
And I also looked at these like, people had done like blogs about their like, their like journey of trying to get rid of their acne. And especially this one girl. I can’t remember what the blog was called. But she’d like started it when she started Accutane (isotretinoin). And she’d posted like loads of photos of her like face and how it had got better. And I think hers lasted about six months as well. And it was really good to see the, like the difference and how it worked on someone else. And that made me more like hopeful that it could work on me.
Most people used the internet to get information, but a few also used it to provide information to others. Devan set up a website about bullying to inform teachers and parents. People spoke about the good and bad aspects of using the internet.
For Sarah, some sources of information on the internet are more reliable and helpful than others. Looking at forums could make her feel worse.
For Sarah, some sources of information on the internet are more reliable and helpful than others. Looking at forums could make her feel worse.
Age at interview: 22
Sex: Female
Age at diagnosis: 16
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I’ve never really felt the need to look for more, well, support networks for acne online. So I’ve avoided that and honestly every time, you know, every so often when I am feeling particularly blue I have looked for those kind of websites and they just made me feel worse because you get all of these people talking about how acne has ruined their lives and how they don’t feel that they can go out. And you’re, ‘Oh god, I went out yesterday, does that mean I should be really embarrassed about going out?’ [Laugh] As I said earlier I have used sources like acne forums to check out potential products, though again as I’ve said, I would be, I am wary of taking those sources of advice too seriously. Partly because of the risk that companies may be employing people to, you know, pollinate them. Partly also just because you get very little information: a) how well informed a lot of the posters are but; b) how, what their, how their skin condition compares to yours and it could be a very different situation. And you don’t get a sense of that online. So when I’ve been doing research, the sources I have trusted most have been those run by the public sector in some capacity. Or academic sources. Though that is, that’s the literature I’d look at now. It’s not a literature I would have looked at when I was younger and trying to work it out how to deal with my skin.
Rachael talks about how she used the internet to search for information. She found “horror stories” about taking isotretinoin.
Rachael talks about how she used the internet to search for information. She found “horror stories” about taking isotretinoin.
Age at interview: 18
Sex: Female
Age at diagnosis: 16
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Just sort of everywhere like news articles and then, also like NHS as well. So, just a variety – Google search – just see what comes up really yeah.
Yeah, yeah. And did you do that with that any of the antibiotics or was it really only for the Roaccutane (isotretinoin)?
It was mainly for Roaccutane but, I do remember looking at Erythromycin cos the queasiness did get a bit annoying and unbearable, so I was like typing in like, 'Is this normal; like when does it go away?' yeh.
OK. And did that include some of the sort of like support group forums or was it mostly the kind of like NHS and organisations?
Mainly sort of NHS, but I think the forums would have been good as well. I just think they're harder to access sometimes yeah.
I looked a lot about Roaccutane on the internet which, to be honest, I don’t think was necessarily a good thing cos there were sort of horror stories about like, people being really depressed or like, or people committing suicide and, I don’t think that necessarily helped; I think it just made it a bit more dramatic and sort of made me feel like, 'Oh no, what's going to happen when I'm on it; am I suddenly going to change?' But yeah I did definitely look at people's different experiences and tried to find, you know what is this drug – like what's it got in it; what are the side-effects – so I think it was quite good to have a bit of a research but, not to scare yourself.
Internet forums and support groups
Many people looked at internet forum discussions, although only a few actually posted on them. Using internet forums to search for information could be useful but it could be hard to get a balanced view of people’s experiences. For example, forums where just a few people’s experience or views were given could be misleading. Also, although it was “useful” hearing others’ stories online, it could be difficult to tell how common their experiences were or what other factors (skin type, lifestyle) had affected them. Even Molly, who found forums useful in researching experiences of taking isotretinoin, said “sometimes it’s not quite as comprehensive as you’d like”. She thinks it would be better if you could ask for more information from people who posted about their experiences.
Harriet read comments people had made on Boots reviews sections and Yahoo answers. She felt some forums only gave “a small fragment of a bigger picture”.
Harriet read comments people had made on Boots reviews sections and Yahoo answers. She felt some forums only gave “a small fragment of a bigger picture”.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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It was just, it was just a combination of things really. I tended to just sort of search and see what I, see what sites came up for my various things, you know. Sort of what’s good for scarring or what’s good for, you know, dryness, things like that. I remember going through on the Boot’s website of various things, looking at the little review section, seeing what people said about it. Yahoo Answers were sometimes helpful, sometimes not, yeah.
Was there any information that you were looking for that you weren’t really able to find online in the searches?
I don’t know. It was sort of, the stuff I was missing I suppose was kind of actual people, cos online it’s all quite, I don’t know, it’s quite anonymous. And there’s people telling their stories but you don’t really know their back stories or how, like whether it’s worked long term and things like that, yeah. So I didn’t really know anyone particularly that had very bad skin or that, or knew and wanted to talk about it. So I tried, I sort of kept on, obviously it’s quite obvious when anyone looks at you, but I didn’t really talk about it in, sort of at school or with my family especially, yeah.
And so with the, like the reviews of products and like the answers that people gave, did you feel like it wasn’t enough information and not opportunities to ask?
Yeah, well, like they’re useful for sort of a little snapshot of what something’s like. But obviously you don’t really know what that person’s skin is like or what general sort of lifestyle they have or anything like that. So it is, it’s useful but it’s just, it’s only a really small fragment of a bigger picture.
Many people felt they didn’t need support groups or didn’t want to talk about their acne to strangers - Naomi felt strongly that she didn’t “want to talk to nameless faceless people on the Internet” about it. But a few thought support groups were a good idea, even though they had not looked for one, and some had found support that suited them. Devan volunteered for an anti-bullying organisation and says that if he felt “low”, he would speak to counsellors on their website. Marga, who says her acne was linked with her “bouts of” depression, went on a “stressless” course and was waiting to go on a mindfulness course.
Emma did “browse” online support groups and thinks it would have been good to have had people to talk to in person.
Emma did “browse” online support groups and thinks it would have been good to have had people to talk to in person.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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I suppose it was more just browsing. I was sort of looking at, particularly when I was looking at online support groups in the time that I was taking Roaccutane (isotretinoin) to try and understand sort of the process of how long it took to make improvements and how to spot side-effects and things like that. And also with the scarring to try and find out what other people were sort of suffering the same sort of things. And, you know, how they felt about sort of having it on show and the interactions they’d have with other people.
And did you ever sort of post anything about yourself or was it mostly sort of reading the comments?
I think mainly it was just reading the comments. I don’t think I was ever really sure about posting about myself. Yeah, it would probably be something like, with this now, that I would do, looking back on it but at the time, I didn't really feel like it. I didn’t feel.
Was there anything that you felt was missing or lacking or could have been better in some way?
I don’t know really. I’m not sure about the online websites because I can’t entirely remember. I guess in terms of the treatment that the dermatologist and the GP perhaps they could have maybe suggested some more sort of support sites or groups. I don’t know if they, like support groups, particularly exist but I remember sitting in like waiting rooms and for a lot of other skin conditions, they were like, you know, ‘you can talk to these people and that sort of person’ and there wasn’t really that for acne. So, yeah.
If that had of been available, what sort of kind of things do you think it might have been beneficial for you?
I think just for maybe just more about confidence and speaking to other people about their sort of social experiences. Because I was always worried what people might think about me and, you know, if someone else had sort of had the conversation with those people and, you know, then I might have felt more sort of that people actually didn't notice or they accepted it more.
For Ish, attending a support group would have been “awkward”.
For Ish, attending a support group would have been “awkward”.
Age at interview: 22
Sex: Male
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To be honest with that, not really. There wasn’t really anything like that I’m guessing or I don’t know, I don’t think I was interested in counselling groups about it. Probably, I have no idea if they even had that option. So, I don’t really know.
So, you wouldn’t have liked it or you would have liked it?
I think during that time, I wouldn’t have liked it. At that time I wouldn’t have liked it all probably. So, yeah, I think I would have thought it was embarrassing. So now I don’t really care. If someone says there is a website, I will probably check it out. And if I do know something that works, I will probably post it because I don’t really care nowadays.
But that time, it would have been awkward. Probably would have been embarrassing.
Other support
GPs and dermatologists could be an important source of practical and emotional support. A few people found it helpful when their dermatologist shared their own experiences of having acne and using certain treatments. For example, Rachael was taking isotretinoin while doing her A-levels and found it “quite encouraging” to know that her dermatologist had taken the treatment when he had exams too. But when Molly went to see her doctor about her acne, the doctor said “if you hadn’t mentioned it then I would have” which made her feel “horrible”. Many felt it was important for doctors to be understanding about how acne was affecting their life.
Friends and family were often a very important source of support, even for those who were older or self-reliant. Molly said her parents gave her “active” support when she was younger like attending doctors’ appointments with her, but now she is older they play a more “passive role”.
Hester explains how support from family and friends helped her.
Hester explains how support from family and friends helped her.
Age at interview: 21
Sex: Female
Age at diagnosis: 15
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I had quite a lot of support because my twin sister also had acne so it was quite easy to talk to her about it and we could have good chats about, you know, it being difficult. And practically as well, like we'd try different things. And, and I think we'd understand what each other were going through. And I think we also, you can understand what's going to help as well. So it's not just a case of, of telling someone, “Oh no, you look fine.” Like it's actually like listening to them, and letting, like I'd let her talk about how she felt. And not just try and say, “Oh, you look pretty, we'll just move it on.” But actually say, you know, “How does this make you feel?” And listening to her was really good. And I don't think it was really until I came to uni that I found other people who'd also had quite severe acne and talking to them about it was really helpful. And really good. And part of like the emotional healing process, and not just the physical healing process. In South Africa I found it quite hard because I was very much the only one that was having really difficult, yeah, really problematic skin. A lot of the other girls had very, very clear skin. And because they were a little bit older as well I think that a lot of them had gone through the phases of having spots and then had really good skin. And I think there was probably a lack of understanding in how it was making me feel. I think a lot of people think that they can just say, “Oh, you look fine.” And then they can-. Because they move on from that conversation, I think they assume that you've moved on from feeling that way [laugh]. Which obviously you don't. And I think just with how it was really difficult with the children as well, and working with them. Just feeling like very exposed. I think people just didn't really appreciate that that was the case, and I felt a bit- I felt kind of bad saying that I felt that way cos a lot of people might have thought that was a bit selfish and that I should just kind of get on with things. But I had one, I had one friend who was really good and just really lovely, and always had something to say that was really positive. And kind of helped my confidence. And when I used to say to her that I wasn't sure that I could kind of keep doing things, and I'd say, “I don't really feel like strong enough to face the world.” And she'd be like, “No, you're, you know you're strong anyway.” And that was really good. She was really a support.
Chris was “quite independent” and didn’t need support in going to the doctors from his parents, but he did appreciate support from his mother when he was considering taking isotretinoin.
Chris was “quite independent” and didn’t need support in going to the doctors from his parents, but he did appreciate support from his mother when he was considering taking isotretinoin.
Age at interview: 20
Sex: Male
Age at diagnosis: 17
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And up until that point when you’d been going to GP appointments, had your parents been coming with you or?
No, I was quite independent in that sense. I mean, my mum would sort of support my thoughts in saying, “Oh, yeah, I think you should sort of go to the GP”, but in terms of coming with me they just, I just did all that sort of stuff on my own.
Yeah, yeah.
But, yeah, I didn’t really feel like I needed support for it. It wasn’t like I was like, “Oh, can you come with me mum?” Or anything like that. And then she was like, “No”. It was more like, it’s like, it’s my skin condition, like, I’m old enough to book a doctor’s appointment and go get this sorted out, so it’s just what I did really.
Was acne or any of the treatments something you spoke to your friends about at any point generally?
Yeah. Like I kind of sort of like spoke to them about some of my thought process You know, like risks and stuff involved and they were like, “Oh yeah, just, like, if you are just, you, you’ll be able to come off it”. They was kind of supporting my thoughts originally. So, yeah, they were sort of helpful or quite helpful to a certain extent.
And what about family members?
Yeah, I mean, like mum, I suppose my mum was the main person I spoke to about it. And she was like, “Yeah, it’s, it’s a good idea just to go on it. See how you find it, if you get depressed, or if like, if you need to talk to anyone, just give me a call and we can like, see how your feeling and then you can just come off it if you feel like you’re deteriorating or something like that”.
One of Emma’s neighbours who was a beautician gave her advice about what products would help her skin and which ones to avoid, and gave her a skin care routine which she still uses.
One of Emma’s neighbours who was a beautician gave her advice about what products would help her skin and which ones to avoid, and gave her a skin care routine which she still uses.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Yeah, well I was quite fortunate that a neighbour of mine was a beautician and so she knew quite a bit about what products were quite good to use on my skin and what would possibly cause breakouts and she was very nice to me. Like when I was about 17, she sort of like, we had a day and she sort of gave me the skin care routine I use now and she sort of recommended those products. I use the same brand for some anti-blemish like foundation if I put make-up on. and also very careful to get it all off in the evenings and things. It makes the make-up quite expensive [laughs] but it’d definitely be worth it.
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