Will

Age at interview: 21

Age at diagnosis: 14

Brief Outline:

(Text only clips) Will developed acne at age 13. He tried creams and antibiotics before being referred to a dermatologist. He took a 6 month course of Roaccutane (isotretinoin) which had some physical and emotional side effects such as chapped lips and low mood.

Background:

Will is 21 and a university undergraduate student. He is single and lives in shared accommodation. His ethnic background is White British.

More about me...

Will developed acne at the age of 13. At this time, none of his school friends had spots and he felt that this made him stand out from his peers. He used some shop bought face washes but when these did not help, he visited his GP. He was given some antibiotic tablets to try as well as some benzoyl peroxide cream. He was referred at age 14 to a dermatologist where he was given a 6 month course of Roaccutane (isotretinoin). He experienced some physical and emotional side effects from Roaccutane such as very dry, chapped lips and low mood. 

An important source of information and support for Will was his mum, who has a background in healthcare. She was able to help Will make decisions about his acne treatment by asking questions at doctor appointments and researching about Roaccutane in medical journals. Will feels that it is important to be aware of side effects which are less severe but more commonly experienced from taking Roaccutane. For example, he found that one emotional side effect from Roaccutane was difficulty enjoying activities he had previously taken part in, such as sports. He couldn’t recall talking to his dermatologist about the emotional side effects but he also thought that he would probably have been reluctant to do so at the time. He felt that his acne itself had been an inconvenience but not a source of major upset whereas the emotional side effects of Roaccutane were more distressing. However, he is ultimately glad that he took Roaccutane because the treatment worked well for him in clearing his skin and his mood improved after he had finished the course.

Will thinks that the emotional side effects of Roaccutance increased his feelings of angst and unhappiness during adolescence. He says that being a teenager is often already a difficult time and that acne can add to this. For example, having acne and the effects of Roaccutane meant that his confidence was knocked and he did not feel that relationships were for him. He focused during this time on consolidating his pre-existing friendship group rather than trying to make new friends. He found that listening to music helped a great deal and that “moody” post-rock bands could be good in the sense of sharing low feelings. Music became particularly important at the same time that he lost interest in his other main leisure activity of sport. This was partly because Will found that his energy levels were reduced whilst he was on Roaccutane and he also sometimes found it difficult to cope with the social side of playing sport which required him to always appear happy.

Will now sometimes draws on his experience of taking Roaccutane when talking to friends who are themselves affected by acne. He finds that people can sometimes be shy about bringing up the topic but that sharing his experience of having acne at a younger age can help open up conversations. He thinks that it’s important for other young people to reflect on their own situation and make decisions about treatment suited to them. For example, he encourages others to “think about the impact outside of just your skin”, including how treatments can affect social activities such as drinking alcohol socially.

Will started on isotretinoin just before his GCSE exams – something his mum was concerned about.

I think the decision making was, you know, this is quite a big part, you know, at the time, you know, everyone thinks GCSE’s are the end of the world and stuff so I think it was quite a big decision for me to think, you know, ‘is this going to really jeopardise like my GCSE’s and stuff?’ So that was the main thing and I don’t know, I just felt that, well, my mum felt in particular that this might really kind of kick things into touch in terms of like my academics or whatever so, yeah that was like the main thing in terms of GCSE’s, but … 

I don’t know, I didn’t really kind of consider that, you know, at the time. I was like ‘yeah, I can smash ‘em, whatever’. So, I don’t know, I didn’t really kind of thing, ‘yeah, this is going to really impact on my kind of academic performance’ or anything, I think it was my mum who was more concerned about that kind of aspect. 

Will knew he could stop isotretinoin because of side effects, but kept taking it partly out of habit.

I think what the dermatologist kind of emphasised was, you know, if things weren’t going particularly well, you know, you could kind of stop it, I think that’s mainly what I remember in terms of support. But as to, you know, you know, a support program or a support network – I don’t really remember much about that. 

Yeah. 

Did you ever consider stopping Roaccutane (isotretinoin) with the side effects that you had? 

[Laughs] No. I, well, yes. Yes, I did. But I think ultimately I’m pleased that I stuck with it, I think definitely. But there was never a time where I was like “OK, you know, I should probably stop this” kind of thing. It’s weird because as I say, like taking it becomes so kind of habitual and so normalised – you’re almost not aware of it itself. It kind of becomes a part of you, it becomes kind of, yeah it’s not something that you’re adding to your body – it kind of just becomes a part of kind of who you are for that sort of duration of time. So I don’t ever remember kind of really being conscious of Roaccutane coming like I’m, you know, ingesting, I’m taking it in. It was kind of that’s it was like a routine. It’s like a habit. 

And it wasn’t something that I considered like ‘yeah, I can stop it’. It almost became so normalised that I was like this is just, this is just how it is kind of thing. 

So, you know, waking up and taking like a paracetamol like if you’re like, you know, you know, this is rubbish example so I’m going to stop that. But yeah, it just became like a really habitual, really normalised so I didn’t think, yeah, I can, I didn’t think I could stop it almost. 

Hm. OK.

I think that was, that’s the main point. I didn’t think that I could stop it even though I definitely could have stopped it. 

So it was almost as if I needed someone to kind of remind me that it wasn’t necessary and I didn’t need to carry on doing it. 

Yeah. 

Like a course of antibiotics where you have to kind of see it through otherwise, you know, blah de blah. I kind of maybe could have benefited from someone telling me, “You can stop this, if you want to”. 

Will’s skin continued to improve even after stopping isotretinoin.

And how soon after starting Roaccutane (isotretinoin) did you start noticing there was a difference in your skin?

I think I was quite surprised because it was fairly, it was fairly quick to come into effect, I think like a couple of weeks possibly. I mean, first obviously it was kind of, my skin kind of dried up and all this kind of stuff. And then, yeah, and then, although to be honest, I noticed most of the improvements after I stopped taking it I think probably because I, from what I remember, it kind of stays in your bloodstream for quite a long time and then kind of still has effects on you. So I think it was kind of almost actually after finishing the course that I think I noticed the effects really, yeah. 

You know, it was one of those things where I didn’t really track its progress, I just kind of let it do it. And then and, as I say, with what with the kind of side effects and stuff, I don’t know I was kind of too preoccupied kind of dealing with those to kind of be like ‘oh daily update’, you know, ‘oh look that one’s gone kind of thing’. 

Will talks about the emotional side effects he had whilst taking isotretinoin.

I don’t know how to describe it. It was almost as if I had like a blanket over my head, so like everything was kind of a bit muffled, like everything seemed quite dark. I don’t know, all my kind of senses were subdued almost. It was like as if all the kind of [laughs] it sounds really over-dramatic, but [laughs] kind of like all the joy had been sucked out of my life in the sense of like, I don’t know, everything seemed less exciting, I don’t know it seemed less, I don’t know, yeah, I couldn’t get really excited about much stuff and I stopped playing sport. I used to play like badminton for like [county name], like county badminton. I used to play a lot, I just couldn’t be bothered. 

It was just nothing really kind of [laughs] excited me. 

Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.

I think there’s a lot of big scary talk in terms of, well from what I remember, I remember being quite terrified of the consequences [laughs] like I thought that, you know, I would commit suicide or my liver would just pack up or whatever. I think there’s a lot of quite severe talk when they describe the side effects, you know, at the end of the day everything has side effects, you know, from paracetamol, whatever. And, you know, they can be, you know, fatal, the side effects of paracetamol, you know, whatever, but I think in a way sometimes they ramp up the fear factor. 

Maybe a little bit too much possibly and I think actually the more, the less severe sort of side effects in a way are more, should be more important to, to be discussed maybe. [Talking in background] So these, these more, these, yeah, like the emotional sort of feelings, the sort of dried up skin, all this kind of stuff I feel is less severe, but actually I feel like it’s got more, it’s got the capacity to affects more people than these, these kind of big scary events. So actually a focus more on these sort of side effects are actually more important than kind of the big scary talk of, you know, people committing suicide and whatnot I think that’s maybe less important in many ways.

Because actually that, you know, those cases are in the minority I think. I’d imagine it’s safe to say like I think, you know, every drug comes with its risk and, you know, it is a, it is, yeah it can be, it can be dangerous, but I think actually being made aware of these more sort of subtle or these more widespread issues I think is more important probably for health care professionals. But I think yeah, I think they’re quite right in giving you, you gotta give the patients’ the facts and stuff, you know, that is important. But sometimes yeah this big scary talk is, I think it put a lot of people off it. I think I was very lucky in the sense that my mum was quite a, she was quite reasonable, she was quite balanced, you know, in her, sort of understanding of like, you know, medicine and whatnot, so she, you know, read up on a lot of journals about, you know, the sort of pros and cons and stuff, but I think if people didn’t have that access to that sort of knowledge I think a lot of people would be like there’s no way I’m touching that. There’s absolutely no way I’m doing that. 

So I think it’s important to, yeah. To make people aware that yes, you know, there are these, these big, big sort of risks, but actually, you know, these are in the minority of cases and actually you will, you will go through, you may go through some kind of difficult times, but ultimately they’re not that, for me, maybe I was lucky, that it wasn’t that bad kind of thing, you know, obviously it wasn’t fantastic, but it wasn’t that bad.

Will bought a herbal cream whilst on holiday with his family.

And actually I found, we went to, where did we go? It was either Slovenia or Slovakia and there was some sort of, oh I don’t know what you’d call it. What’s the? Oh, I don’t know. It was some person who kind of makes kind of like herbal sort of creams and whatnot and all this jazz and we found one that was really, really good for my skin. I can’t remember what it was. It was just some woman who just made it in her shop, but like it was just really great, so I used that quite a lot as well. 

It doesn’t sound particularly legit. 

[Laughs]

Thinking about it now, but, it was probably, you know, just some, you know, natural stuff, but, yeah. So I used that quite a lot as well.

Actually, I think I’ve still got a pot at home because I just brought back like five pots of them. So I think they’re knocking around in my cupboard. My brother’s got quite bad acne now at the moment as well so I should probably tell him to dig some of that out. 

That’s probably somewhere in our cupboard so. 

When he was on Roaccutane (isotretinoin), Will felt very down. Listening to music was a great comfort.

Could you sort of maybe try and explain why it is that you think music was so important to getting you through?

Yeah that’s interesting. I don’t know. I’ve never really considered that. I think I spent a lot of time on my own more than I had done previously in my life so I think I became, I don’t want to say introverted because I, yeah, I don’t think I was introverted, but I think music then kind of helps you to, I don’t know, maybe, oh God, it’s tricky. I don’t know, it, yeah, it’s hard to articulate it. That’s the beauty about music, isn’t it? 

[Laughs]

No, I don’t know. It, it like it’s just like, especially like people on Morrissey and people like they speak to you in like a way that no one else can, like no one else can understand you and like going through all these problems and like oh don’t worry Morrissey’s here, he’s going to sing to you so. 

I don’t know it’s weird like, it’s almost like a another kind of support network even though like this person doesn’t exist or whatever like it’s almost as if I don’t know other people are having like problems and like being all like moody and depressed and you’re like ‘yeah, yeah I know what you feel, man’ like yeah, so misery loves company and all that.

So, yeah I suppose that’s why but yeah, no, music was like a really big part I think, helping me through and I’d just lie in bed for hours just like listening to brooding post-rock and stuff. 

When his acne was severe, Will had a close group of friends who he was comfortable with but having a girlfriend “went on the back burner”.

I think like, things like girls went out the window completely. I think that was just like not an option for me. I was just feeling, as I say, I was going through my Morrissey years so I was listening to that, you know. ‘I know it’s over’, you know, all this kind of rubbish so that was never really kind of a, a thing for me so that kind of went on like the back burner for a while. A bit like that in friendships as well. I think in many ways like my friendships became a lot more solidified with like, with my good friends that I knew really well, like I would hang out, like I’d kind of recognise that they were people that I was really comfortable like with at the time and wouldn’t really have to put on a front almost. So I think kind of my kind of core friendship group grew quite significantly, significantly during that time because I felt that I was like comfortable with them I wouldn’t have to like pretend that I wasn’t like particularly happy and stuff. So, yeah, I think that was like quite a normal sort of friendship relationship kind of vibe. 

Will found it useful talking to friends about different treatments.

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. 

Although isotretinoin made him “subdued” for a “brief period of time”, Will felt that was ok. He suggests people weigh up the “pros and cons” of taking any treatment.

I think the headline is for me, Roaccutane (isotretinoin) was a really good drug in many ways. It does what it says on the tin in terms of, for me, it really helped when no other treatment had previously done or works but I think, yeah, people just need to be aware that it can slightly change your life in terms of, for that brief period of time it can, you know, it can have impacts and you might be lucky and, you know, get through it fine, but you just should be aware that, you know, and it’s fine to be not fine. That’s, that’s an awful phrase, but I’ve heard that about quite a lot actually. But it’s fine to be kind of a little bit subdued or a little bit, you know, to take that kind of in your stride sort of thing.

I think you’ve just got to use your own judgement, I think. I think don’t rely too heavily on expert advice. I think would be my thing. I think you’ve got to use your own intuition as to what you think is the right course of action for you. I think you’ve got to really think about, you know, where, like what sort of part, you know, where you are in your life and what you think is going to be the best course of action for you and I think you’ve got to really kind of take that, that personalised kind of approach when you’re thinking about it. You can’t just rely on general kind of expert advice. You’ve got to think, you know, just because someone else has been through it and, you know, come out, you know, relatively OK, you’ve got to think, you know, ‘where am I in my life?’ You know ‘how is this going to affect me?’ And really kind of think about that more, I think. 

Really put, spend a lot of, especially with Roaccutane you’ve got to spend a lot of time weighing up the pros and cons and just make a pros and cons list, like I love pros and cons lists. They’re great, like you can just see what’s great and what’s, what’s not. So I, yeah, it’s probably worth just doing that and just maybe kind of speculating about what you think might be the, might be the downsides, might be the, you know, the positives to it.