Rachael

Age at interview: 18

Age at diagnosis: 16

Brief Outline:

Rachael was 16 when her GP diagnosed her with acne. She took a number of oral antibiotic treatments for her acne before being prescribed Roaccutane (istotetrinoin) which helped a great deal.

Background:

Rachael is 18 and an undergraduate university student. She is single and lives in university accommodation. Her ethnic background is White British.

More about me...

Rachael has had acne for the last 3 years and received a diagnosis at 16 by her GP 2 years before the interview. She found the appointment uncomfortable. She recognised that it can be difficult to “face up” to having acne, especially as she felt the word was quite “ugly”. Rachael’s GP prescribed her a number of oral antibiotic courses which she tried for several weeks/months each. These treatments had some unpleasant side effects, such as making her queasy, and they did not clear her skin. She found this a very difficult and stressful time since she was coping both with exams and her skin condition. 

Rachael was referred to a dermatologist who was able to prescribe Roaccutane (istotetrinoin) for several months. Although this treatment had a number of warnings and she experienced some side effects like dry lips, Rachael is now very glad that she took Roaccutane (istotetrinoin) as she no longer has any active acne. She hopes that her acne scarring will heal over time and she does not think that she will need to take Roaccutane (istotetrinoin) again.

Rachael feels that her friends and family were sympathetic and supportive. However, because her friends had only had “the occasional spot” rather than obvious acne, she sometimes felt that they could not really understand what it was like for her. She looked for information online about the treatments but felt that it was difficult to find both accurate facts about side effects and more personal accounts of teenagers’ acne experiences.

Rachael thought of spots as just a normal part of being a teenager for a while.

It started off when I was about sixteen and I started getting like a few spots and then obviously that’s normal for like teenagers, but I think when it got really bad I sort of, I think in denial for a while because you don’t really want to admit like that it's really serious and it's not very nice to think about. So, I think I sort of like wore quite a lot of make-up and sort of like just tried not to think about it too much but, and it really annoyed me when my Mum would like point out or like, be like it looks really painful and she'd be like, "Is it painful?" I’d be like "No it's fine, it's fine," like. But, yeah I think… so you suddenly realise that it's actually a problem and then, I felt like as soon as I realised it was a problem it suddenly became…started to get worse. 

Rachael learnt more about acne causes when she saw her GP.

I remember asking like, "What is causing this?" as well. And they're like… I was like, "Can I wear make-up?" And they were like, "It's not caused by the make-up; like you might think it is but it just, it is the hormones and it is like bacteria and stuff." I don’t really know the exact causes but they were like, "It doesn’t matter if you wear foundation or not; like you’ve either got it or you haven’t got it," and that made me feel a lot better about it I think cos I knew it wasn’t anything I was doing, so yeh.

So, up until that point did you sort of feel like it might have been because you’ve been wearing foundations and?

Yeah, I felt like…I felt like I was wearing the foundation because I had like bad skin but that it was making it worse, but I felt like it was a bit of a cycle that I couldn’t break. But, they like assured me that like that could be a contributing factor but, you do have a skin condition, it's not… it's not your diet; it's not your like what make-up you wear. Cos I was quite active as well, so I did a lot of sport and stuff and… but, no they assured me that it was that, and that made me feel a lot better knowing that it wasn’t my fault yeh. 

Rachael felt upset hearing from her GP that she had acne.

So what did you feel when you were first told that you had acne, what was your response to getting the diagnosis?

I think I was a bit like a bit annoyed and frustrated and a bit like… it's annoying admitting that you’ve like got an actual condition or a problem. Like the word acne just sounds a bit like harsh and a bit, yeah and I felt like some, like you’ve got acne as if… I felt a bit like, I guess disappointed in myself. But, I know it wasn’t my fault exactly but, it's, I know that everyone has bad skin as a teenager but, getting told you’ve got like severe or like moderate like acne, yeah I felt a bit annoyed and a bit insecure about it I think.

Is there sort of a word or words or like a phrase that you'd feel more comfortable, up until that point of just describing your skin as?

I don’t really know; I just knew it was bad but I didn’t want to admit it. And I think it's difficult cos I think, if you give something a word that word will eventually then get the connotations. So, yeah I didn’t like the word acne but I couldn’t think of another one I guess.

What sort of connotations does it have for you?

I think it's kind of maybe like ugliness or like, being ashamed. Like personally, I think that they're sort of connotations – it just sounds quite like an ugly word yeah, in my opinion. 

Rachael describes at a typical dermatology appointment for her.

So, I'd go in to the hospital; go wait in the dermatology area, sign in. Then, like often the waiting times are quite long at the hospital so I found that quite annoying. Yeah and then I'd just go in and they're really friendly. They weren't often that long – just sort of spoke a bit. Like, I'd tell them whether I thought there was any improvement and then they'd tell me whether they thought there'd been any improvement as well. And, I often took my Dad to these and he'd like also like say, "Yes there's been an improvement," or, "No there's not," cos obviously he's been able to observe me for a longer time. It would just sort of like collect all our three views on the situation and then think of where to go from there.

How often did you get to see your dermatologist, was it regular appointments?

It was I think, sometimes cos it was through a hospital; it was quite hard to like get appointments. And I had to miss a few lessons occasionally as well cos they're always on a Thursday morning. But they, I think probably like a few months apart maybe. So, they weren't really regular but I think it's quite good to have them not too often as well.

And were you still able to see your GP in that time or?

No I was completely dealt with through dermatology and then if they needed to like contact my doctor they could, but I didn’t see the doctor anymore.

Rachael had a topical medicine that she got used to by increasing the number of hours she kept it on for.

And when you were using the topical treatments you sort of said that it changed, the amount of hours that you'd leave it on?

Yeh

What was your sort of routine with that?

So with that I'd have to put a bit on, like a few hours before I went to bed at first. So, then I could wash it off before bed and then, and that was a bit annoying sometimes, but then the next night I'd then have to wear it for longer hours but still, I'd have to make sure I washed it off before bed. So, I'd have to put it on like earlier, like five or something; wear it till like ten and then take it off and then eventually wore it for the whole night so, just about getting into a routine.

So did that routine have sort of any impact on the things you could do in the evenings or?

I think I could still do stuff while wearing it but it was just quite annoying and I'd keep forgetting to put it on sometimes and that was a bit frustrating cos it is an added like commitment and it's not one that you feel you always need to do cos it's not like your school work and stuff but, you do feel bad if you don’t do it and… but also doing it is quite uncomfortable as well.

Rachael felt queasy (sick) whilst on antibiotics which became “annoying and unbearable”.

I think the worst one was probably erythromycin – which was like red circular ones and I had, I know I had to take four a day and they just made me feel incredibly queasy, like the worst queasiness ever. I just sat in class and just… it was horrible. But , yeah because, and I know a friend that went on them once for something, I think some ear infection and like she just like went home ill one day and she was like, "I'm on Erythromycin," and I was like, "I've been on it for ages." So, I think eventually, like the longer you're on it the more you don’t get the side-effects. But that didn’t do anything either, so I was just feeling ill and then still had bad skin and it was just frustrating yeah. 

So, how long did you try each of the antibiotics for?

I'm not entirely sure; I think probably, in some cases like a month, two months, probably is the average. Like, give it enough time but, wasn’t on it for ages cos if it's not working it's just not working, you can tell I think. 

Rachael talks about having a pregnancy test before she was given isotretinoin.

Yeah so they, so I was required to take a pregnancy test prior to starting the drug. And I didn’t like doing that because it was just, well I knew it wasn’t necessary at the time. So, that, I felt that kind of made it even more embarrassing that it had to be. Like, I don’t personally like hospitals or anything, and having to be at one and like do that, I felt was like quite annoying and kind of made it harder than it needed, perhaps needed to be. But apart from that you can sign a pregnancy disclaimer at the beginning so you only have to do one at the beginning and then you don’t have to do anymore. And I felt like that was quite good because then you could just leave it at that but, there were sometimes some like complications like, if you got a repeat prescription, sometimes they didn’t send it to me cos they were like, "You haven’t taken another pregnancy test," and, yeah it just got a bit complicated but, yeah.

Rachael thinks it’s difficult to work out why she felt upset at times whilst taking isotretinoin.

So, it's hard to like just like tell whether it is the Roaccutane (isotretinoin) or whether it's what's going on, cos I was quite stressed cos I was doing my A-levels. So, I did like cry a few times when I didn’t really know why I was crying and it was just at home; like I was fine at school like and everything. And like, I think my Mum like pointed out to me like, you know, "This isn't normal, you are not coping, you are being more upset than…" cos I'm quite like a positive person I think. But yeah, that was quite hard but yeah it's hard to tell like whether it's you or whether it's the situation or the drug. So, I wouldn’t want to like tell other people not to go on it or, encourage them to go on it cos I think everyone deals with it differently. But I think it did definitely affect my emotions or made it harder to deal with things and then, with the A-levels, that was like a combination and just made things a bit difficult yeh.

Yeah. Were there any other sort of aspects, like stresses or triggers for you that you knew kind of made it harder, either physically with your skin, or emotionally to sort of cope with it?

I think it is annoying physically as well because you do still have the spots while you're on it. So, that make, like obviously it affects things. But, I don’t know, I think it's sort of, yeah the triggers I guess would be like academic stresses or like, if you're having like, you know a sort of family argument or, any like friendship problems, I feel like that becomes more of a trigger than it would have been. So, I think that it is triggers but I think you just lose your ability to cope with them as well and yeh.

So, you lose your ability to cope from them because of the emotional…?

Yeah I think you just lose the ability to see that it's not a big deal and you just, I think you just become more dramatic about it I think yeah.

Rachael gradually eased into drinking some alcohol socially.

But with alcohol, I guess the main thing to say is like, on Roaccutane (isotretinoin) I couldn’t drink for a while which is a bit annoying especially like when you're eighteen and you sort of wanna have fun with your friends. But I didn’t let it stop me – like I'd go out and not drink or I'd… or I would like still drink a bit and I think, yeah you don’t have to let it stop you doing it.

How did you sort of assess how much it would be OK to drink?

Well, at the beginning I drank nothing, I literally had, maybe the most I'd have was like a sip or something. I went out quite a few times and just drank nothing. Even like going clubbing I would not drink anything just because I felt, at first it was, I was just like a bit afraid I guess. Like, cos it's really drummed into you shouldn’t drink on it because it's affecting your liver and then you don’t want to add more like stress on your liver. But after I'd been on it for ages it just sort of… it feels like you’ve got over the side-effects maybe and I just felt like I could drink and I felt like that, because there was less of an ache maybe that I felt more comfortable so.

Rachael explains that having acne fundamentally affected how she saw herself and made her less confident.

I think, for quite a long time it sort of defines you and it affects your day to day life. And I think it does affect your identity and how you see yourself because you sort of see yourself through that, as opposed to seeing like who you are. It just gets in the way of that. And for a while, like yeah it does, it makes you feel like less confident and like you do need to like wear make-up to look good, so yeh.

I think some people are just naturally more confident and less bothered about the way they look but, some people aren't so, I think that just plays a role but, I think I try to be quite positive about it but sometimes it was frustrating cos I just, I didn’t want it, I just… it annoyed me, like I just didn’t really understand why I had to have it so, that was quite annoying.

Rachael thinks having family at the doctor’s appointments helped her keep track of things.

So, when you first went to the GP did you go with anybody, like a family member or?

Yeah I think I went with my Mum. Like, I think I might have gone with my Mum and sister; my sister waited outside and I went in with my Mum yeah. Like I think she's come to all my doctor's appointments ever yeah.

So she's been quite involved?

Yeah, I think it's really good to have like family members involved with appointments because they can keep track of things and they can ask like questions to the doctor like, "She's been on this for ages; what's going to happen?" whereas I might not have felt the confidence to be able to do that so, yeah it was quite good support.

And, I often took my Dad to these and he'd like also like say, "Yes there's been an improvement," or, "No there's not," cos obviously he's been able to observe me for a longer time. It would just sort of like collect all our three views on the situation and then think of where to go from there yeh.

None of Rachael’s friends had acne. It was helpful talking to them about it, but it could be frustrating too.

Yeah, I definitely spoke to my friends a lot about like having bad skin. Cos they always encouraged me and said that that wasn’t the case and, I was always like, "But, kind of like, it's so noticeable." They were, like "Can you not just see it?” Like it's like always like there; it's uncomfortable, it's red, it's like protruding. But, I think it was really good to talk to people about it and my family were really supportive as well. It did annoy me though when people would like point it out or be like, "You need to do it like, like what are you going to do about this?" cos you don’t really want to face up to it sometimes. But, yeah it definitely helped talking to friends and, yeah they would be like, "Oh, so it's actually acne?" and I was like, "Yeah," whereas they were just like I think, thought that it was just a bit of bad skin but, I just knew it wouldn’t, was not going away at all like, yeah.

So that’s an interesting word thing as well isn't it, sort of labelling ‘acne’ or ‘just bad skin’?

Yeah and I think some of my friends like were…they didn’t…were a bit like, they didn’t know really about it and they hadn’t been through it and so I felt sometimes it was a bit frustrating cos it was always there for me, whereas some of them just like… I felt like they took it for granted that they just had the occasional spot or sometimes just a bit, a few spots. And I felt like there's a big difference between the two, yeah. 

Rachael feels less self-conscious at university because people are less ‘cliquey’.

Are there any sort of particular places that you'd feel more conscious of your skin than others?

I guess in school environment, a college environment – I feel like you'd be more conscious because I think… I dunno, I always felt like that’s the sort of place which could be more sort of quite, people try to look good or quite… yeah I think that’s the main place and then also sort of social gatherings.

Yeh. And does that sort of extend to at university as well – do you feel that’s a similar setting or?

I feel it's different. I think university is very different than the sixth form college I went to cos that was more sort of cliquey and very friendship group based, whereas here I feel like everyone just gets on with everyone and I think it's a very different set-up. So, I feel like I wouldn’t be as self-conscious here.

For Rachael, it was hard to get a clear idea of the balance of views about people’s experiences of isotretinoin.

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.

Rachael talks about how she used the internet to search for information. She found “horror stories” about taking isotretinoin.

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.