Sarah

Age at interview: 22

Age at diagnosis: 16

Brief Outline:

(Audio or text only clips) Sarah’s acne developed when she was 16 at the same time as an unknown rash on her face. She currently does not see a dermatology or take acne medication as she feels that her acne does not, and should not, greatly impact on her life.

Background:

Sarah is 22 and a house parent at a boarding school. She is single and lives in shared accommodation. Her ethnic background is White British.

More about me...

Sarah developed acne and a rash across her face at the same time when she was aged 16. The rash eventually went away but her acne remained. Sarah felt self-conscious about the rash as it was very visible, affecting the skin around her eyes, ears and neck She was not overly concerned when she developed acne as she thinks it is very normal for teenagers. She has tried different treatments for her acne in the past with only limited success and she is not currently taking any medication for her skin or seeing a dermatologist. 

Sarah was referred to a dermatologist when the rash and acne first appeared. She took antibiotics and then the contraceptive pill which cleared the rash but not the acne. Taking the pill has reduced Sarah’s acne in the past but she found the side effects for her physical and emotional health to outweigh the benefits to her skin. She last saw a dermatologist about 2 years ago and says that she has not made appointments sincebecause she feels that her acne does not, and should not, greatly impact on her life.

The doctors that Sarah has seen have repeatedly recommended she take Roaccutane (isotretinoin). However, both Sarah and her mother were shocked on learning about the side effects. Sarah also found it off-putting that the treatment would require her to go back on the contraceptive pill and says that she would prefer to live with acne than the demands of taking Roaccutane. Sarah’s acne tends to be only small spots and not painful with the exception of an occasional cystic spot. It mostly affects her face but she has had a few spots on her back and chest before. She recalled a time when she avoided wearing a backless dress and thinks that this may be because there is more stigma around ‘bacne’. She is unsure about what triggers her acne and although she suspects that there is a link to diet, she has not been able to identify what ingredients this may be for her.

The move from home to university meant that it was more difficult for Sarah to get consistent medical care; she had to register at a new GP surgery and so she did not have pre-existing relationships with any of the doctors or nurses there. Sarah said that it took her “a while to work out how to navigate the NHS”, something which she thinks many young people face, and she thought that this would have been easier if she had been based in one location. Another reason why Sarah has not pursued more treatment for her acne is because she feels that it is not a particularly urgent concern for her. She found that the doctors and dermatologists she saw tended to take her acne more seriously than she did and they assumed that it was having a very negative impact on her life. Overall, she described her experience with healthcare professionals about her acne as “sporadic and rarely helpful”.

It is important to Sarah that the products she uses on her face have been thoroughly reviewed by other customers. She has researched about acne online more generally but finds that others’ accounts of their negative experiences with acne make her feel worse because they imply that she too should feel embarrassed about her skin.

A significant change to Sarah and her family’s approach towards pursuing treatment for her acne was when she was diagnosed with ulcerative colitis (a long-term auto immune condition which causes the colon and rectum to become inflamed) during her undergraduate degree and this became the focus. She also decided against using one topical treatment for acne as the patient information sheet said that it was not recommended for use by those with ulcerative colitis. Her ulcerative colitis has had much more of a profound impact on her life, affecting energy levels and concentration, disrupting routines and social activities, and making her feel more embarrassed than her acne ever has. Sarah says that there are odd days when she feels embarrassed about her acne and she does tend to wear make-up if she is going out to see people. However, this is a rare occurrence; overall, she does not worry too much about her acne and prefers to focus on other activities like her studies. For Sarah, her acne links to wider beliefs about body image and she finds feminism to be helpful in understanding the mixed feelings she has about her acne.

Sarah is not sure about what her future with acne will hold. She may look into the dermatology literature to learn more about effective treatment but she is also not concerned if other more interesting opportunities distract her from doing so. She thinks young people with acne should try to have “a strong voice” about their condition and possible treatments. She recognises that some people may be very upset about having acne but that it’s also important to know that it is okay to not worry about it.

Sarah developed both acne and an unknown rash at the same time.

I can’t really remember when I was diagnosed with acne. I think it was in Lower Sixth in secondary school. When I was younger than that, more kind of Year 10/11, beginning of Lower 6th, I also had this very nasty kind of red rash. We, it was variously diagnosed as eczema, dermatitis. We never got a kind of clear idea of what it was or how to treat it. It would be kind of around my eyes and around my neck and just generally looked very red and unsightly and that just disappeared by the time I got into 6th Form. What didn’t disappear was the acne and that just kind of remained throughout 6th Form and also throughout my time at university up to the present. Although it has certainly gotten better than it was while I was an undergraduate when I think it was particularly bad.

So the rash and the acne came at the same sort of time for you?

A similar time and then one disappeared and the other didn’t. If I’d had the choice honestly I’m really glad that the rash disappeared ‘cos the rash was very difficult to cover up and [pause, thump/door closing in corridor] that really upset me, the rash – the acne, a lot less.

Sarah saw doctors about acne for many years before deciding to stop medical treatments.

And could you tell me a bit about going to the doctor’s for both the rash but maybe acne as well?

For both the rash and the acne. Going to the doctors was, so we, for quite a while I think I tried to deal with it, you know, just by putting on creams and whatever  with my mum’s help. And eventually we went to the doctor and got referred to a dermatologist who tried to treat both conditions but… what happened? I went on antibiotics which didn’t really do much. I went on the pill, I think it might actually have been the pill that cleared the rash up.  The problem was that the, there was a very long waiting list to see a dermatologist and when I moved away from home for university, the appointments got quite disrupted and in the end – especially as none of the treatments they were advising for me seemed to be doing that much good with the exception of the pill which I went, eventually went off because I found I wasn’t agreeing with it in other ways. The treatments didn’t seem to be doing that much good and so I just ended up not actively organising any more dermatologist appointments and I’ve not been to a dermatologist now for about two years.

Sarah remembers a time when spots on her back affected her choice of clothing, but she’s unsure why this was the case.

Every so often I’ve had a few spots on my back and a few on my chest but nowhere near as many as I’ve had on my face. And right now I’m not actually sure but I think I’m, I probably don’t have any on my chest and my back.

Do the different locations have any sort of significance for you in terms of the way you feel about it?

Now that is an interesting question because I do remember once considering wearing a backless dress and deciding not to because of acne I had on my back which is interesting because why would that be more of a problem? Is it that it’s a lot harder to cover it up with makeup? I mean I guess I could have had a friend to help me but it’s not really to ask, you want to ask of your friend. It could also be because I’ve got a kind of a faint birth mark on my back but I definitely remember it being the acne that was the problem. Is it because it somehow seems acceptable to have acne on your face and not on your back? That could be it. I remember my housemate last year, she had had acne and had taken a course of I think it was a steroid cream that had cleared it up. And kind of going on and on about how she had ‘bacne’ and how much she hated it. I think that kind of created a bit of a stigma about back acne that for some reason I don’t feel about face acne.

And was the occasion with the dress was that since you had that housemate or was that a previous experience?

I think it was since I had that housemate, I think she was a bad influence on me [laughs]. It’s not something I think of very much but this is primarily I guess because I don’t expose my back that often.

Sarah’s experience of seeing doctors and getting treatment has been inconsistent.

Moving away from university and not, and having a break in your healthcare and having to register with a new GP and not having an ongoing relationship with the GP has undoubtedly made it harder and has I think been a reason why I have not sought as much medical advice as I might have. It’s taken me a while to work out how to navigate the NHS and it would be a lot easier if I’d been based in one place the whole time.

Could you say a bit more about that process of learning how to navigate NHS healthcare?

Yeah. I think when I was in contact with dermatologists I’d get very frustrated at the length of waiting time to get an appointment and appointments being rearranged and that kind of thing. And I never really followed up on it because acne didn’t feel like a particularly urgent problem. When I was dealing with ulcerative colitis which was an urgent problem, I had to develop a, I had to be more assertive, I had to say, “No, I need an appointment sooner than this”. But it’s difficult to say that with acne because it’s not, you know, it’s not really making you ill in the same way that a gastro-intestinal problem is for example.

Sarah had worried when one of her topical treatments for acne had a warning for people with ulcerative colitis.

And with the topical cream that a GP in [university city] prescribed that was sort of, you weren’t able to use – was your GP aware of you having an additional condition?

Yes she was. I think it was just a case of not being aware that the cream might interfere with that.

Yeah. 

In the event I did actually raise this with a couple of gastroenterologists and they both told me that this was ridiculous and I shouldn’t worry about it and I should just use the topical cream but, you know, when you’re kind of reading a patient information leaflet and it says, “Do not take if you have colitis” and you don’t, you don’t want a flare up of colitis. It’s not a fun experience.

Sarah found the side effects from the contraceptive pill outweighed the benefit for her skin.

I’ve been on a number of different pills. All of them have made me quite volatile. The first one I was on which was Dianette, which was kind of prescribed particularly because of the high oestrogen levels in the hope that that would help my acne. That gave me really bad mouth ulcers which is not listed as a side effect of Dianette but they stopped the minute I stopped taking it and I can’t think of anything else that would have caused that to happen. I think all of them also made me gain weight which, I mean, I‘m aware that this is very silly because I could stand to gain a bit of weight but I did not like it. And in general I just found that I was happier off them than on them, in spite of the impact they had on my skin, and without fail every contraceptive pill I’ve been on has improved my skin.

So for you, it was sort of weighing up the side effects against the improvement in your acne at that point?

Yeah.

Sarah has several reasons for why she’s never taken isotretinoin.

Doctors had quite consistently recommended Roaccutane (isotretinoin) but I looked at the side effect list for Roaccutane and I just thought, ‘Honestly I think I’d rather have acne’. So.

That decision about not taking Roaccutane (isotretinoin) was that something you talked to other people about, whether it be family members or the dermatologist or friends?

Yes. Well I spoke to my mum. My mum had been in both consultations where Roaccutane was recommended and the first thing she said when we went out was, “Gosh, you’re not going to go on Roaccutane are you?” And I think after that there wasn’t really a need for a discussion with anyone else.

Was that sort of your opinion as well, of it’s just something to be avoided?

I mean I think my opinion was very influenced by my mum’s reaction to Roaccutane However looking at this now a couple of years on, slightly older and more detached – I would stand by my decision not to go on it and if somebody offered me Roaccutane now I wouldn’t take it. And that is my decision.

I didn’t like the idea of the dry skin because this is a problem that I have had. I didn’t much like the idea of having to go on the pill to be on Roaccutane, having just come off the pill, not having enjoyed it very much. I know the birth defects obviously are only a side effect if you’re pregnant. I think I was just quite freaked out and this doesn’t sound, this obviously is not particularly rational. I was just a bit freaked out to think that if it was powerful enough to cause those birth defects then what might it do to me which, which I know is not particularly rational. But it was just anything that causes those kinds of birth defects I don’t want to be putting it in my body I think was the feeling I had. 

Although it can get her “down” some days, Sarah says acne has not been something that has really affected her social life. If she is going to see someone she uses make-up to cover it up.

I don’t, I mean there have been odd days where I’ve felt really embarrassed about my skin but, well I mean there have been odd days and I would generally make sure that I wore make-up if I were going out to see people. If I were going out to the library I’d, I just don’t care but if I am actually seeing somebody then I would make sure I wore make-up. But while there have been odd days where it’s gotten me down they really have been odd days. I wondered when I say this kind of thing if I am protesting too much and actually it is terribly important to me and I’m just not allowing myself to acknowledge it but I, it’s just not really something that I’ve noticed myself worrying about that much. I don’t feel like it’s affected my friendships or my social life or my relationships. And obviously, given the choice, I would rather not have acne but given that this is the situation I am in, I’d rather just get on with my life and not worry about it that much.

When she was at school, Sarah was more worried about what people might think of her hair and worried she might seem less attractive because she was studious.

I think when I was at school, I was, I was quite romantically unsuccessful at school. And I know this sounds bizarre but I was very embarrassed about being un-, not very romantically successful but I never remember blaming the acne on it. I remember thinking that, I remember blaming my hair which was quite bushy at the time and I remember worrying that everyone thought that I was a nerd or a geek and just not very interesting and I remember worrying about not being cool enough and not wanting to go drinking and not being funny and not being a good dancer but I don’t actually remember [laughs] worrying about acne too much. I mean maybe I’m just forgetting it. And I did, I did worry about the rash. And yeah when I got to university it just didn’t really… 

Sarah compares having acne to another health condition that affected her life much more. She thinks acne doesn’t have to be a problem.

Well so I mean when my ulcerative colitis flared up, I, it was really physically limiting my life. I was having to, it never really got to the stage where I had to plan my day around the condition but I was constantly having to kind of rush off to the loo at odd opportunities and I did feel embarrassed about that and I did feel embarrassed. I did feel the need to kind of make excuses for myself. And also it, aside from just meaning that I had to run to the loo all the time, I got exhausted, it affected my performance in my work. Acne’s never done anything like that to me. It’s, it doesn’t make me tired, it doesn’t impede my concentration. 

And I guess I just feel like I’ve always been of the opinion that it’s only really a problem if you make it into too much of a problem. And I am aware that, I say this knowing that obviously people notice it and obviously even if only on a subconscious level people probably do make judgements based on it. But given the other battles I’ve had to fight, it’s not really seemed like the most important one.

For Sarah, some sources of information on the internet are more reliable and helpful than others. Looking at forums could make her feel worse.

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.