Shams

Age at interview: 18

Age at diagnosis: 7

Brief Outline:

Shams’ eczema has caused difficulties in his schooling and personal life. Although finding the right treatment was a long process, he found that settling into a routine with treatments has helped in managing his eczema.

Background:

Shams, aged 18, is a sixth-form student of British-Bangladeshi descent.

More about me...

Shams was diagnosed with eczema when he was seven. He is of British-Bangladeshi descent and his mother encountered a language barrier with GPs. As a result, Shams had to translate and take responsibility for his treatments from an early age. Although this was initially difficult, Shams began to understand the importance of a consistent treatment routine when he got older. His triggers include dust, sweat, and possibly stress.

With regards to treatment, Shams hated using liquid paraffin because he found it greasy and uncomfortable. He has used a variety of steroid creams and has been prescribed sleeping tablets in the past for when his eczema has been very itchy at night. He tried UV light treatment but found it ineffective. Shams has moved around a lot and seen many different GPs who have had different approaches to treatment. At times, this was frustrating because GPs would provide different advice and some were hesitant to prescribe the medications Shams would request. When he was 13, he was referred to a dermatologist after treatments through his GP did not work. Shams found that the dermatologist consultations differed from GP consultations because the dermatologist took the time to analyse every patch of eczema on his body before prescribing treatment. Rather than prescribing a single treatment, the dermatologist offered him a more tailored treatment plan with different medications for different parts of his body. Shams used the internet, namely forums and comment sections, to learn how to manage his eczema. Although his medical advice still comes from healthcare professionals, his management strategies (e.g. wet wraps during physical activity) were found online. 

During painful flare-ups, Shams was unable to attend school and this had a serious effect on his learning. Fortunately, some of his teachers made extra time to help him and set assignments aside for him when he was absent. However, he has also encountered teachers that are less sympathetic. With regards to work, Shams refrains from working in the food/restaurant industry because he finds it unhygienic with his eczema. His appearance during big flare-ups has influenced his success in searching for work in retail and his motivation to pursue acting. With regards to relationships and friendships, Shams often distances himself because he is worried people will not be able to cope with his eczema. He wears long-sleeved tops and long trousers to hide his eczema and avoid comments from others. He does not like to talk about his eczema so he has learned to be “quick on his feet” with excuses when he cannot participate in an activity. 

Sham’s advice to other young people with eczema is to get into a disciplined routine of treatment and to speak to a healthcare professional about alternatives when a treatment doesn’t work very well. He notes that doctors should be aware that “everyone is different” and that treatment plans should be tailored to the individual and their lifestyle. He encourages teachers to persevere and be understanding when they have a young person struggling with eczema. 

Shams says that the scars left by eczema are often visible and that other people notice them.

I have a sort of quite a few significant scars on my body. Sort of pa-, some don’t look like scars; some just look like sort of black head spots, just black p-patches on my skin where eczema was there, where I've scratched away previously. Main example is my sort of wrists here, and they’ve just got black marks on them, and even so, even so so-and-so areas don’t have eczema, I still cover up because of the scars. The scars are still noticeable; the sort of skin discolouration; the skin sort of largely differs from my normal skin tone – one area will be sort of brown; the other area will be really dark brown, noticeably dark brown where people would sort of question what, “what happened there, how did y-…that happen? Or do you have some sort of…” they’d question if I have some sort of other skin disease. I don’t know, I just have hec-eczema. They’d question, “are you sure, this looks like something else? I’d be like “no, it's just scarring…it's how it is”.

Shams explains about the difficulties he has when putting treatments on his back, especially when eczema makes it difficult for him to move.

A worst place I've ever had was on my back sort of in-between my armpits and my back, and I'm trying to find…especially when I used to apply medication, when I'm trying to find the right area. I mean sometimes you end up applying medication on the normal part of your skin and you turn yourself in the mirror and see that…that place you're meant to apply hasn’t applied. And the other places would be sort of back of the knees, arms areas. Those are not painful to apply medication to but sometimes when eczema becomes really worse; my skin becomes sort of stiff and hard to move. During those times it's hard to sort of bend your arm and apply it to yourself. Well, you're just kind of stiff armed in a sense, you can't move.

Shams would have appreciated his doctors talking more about the social and emotional impacts eczema can have.

A lot of ‘em straight away from mentioning stuff for like the…I don’t know what…if it's deliberately or unintentionally, but none of them mention the sort of social implications that eczema would have, and I would be more happy if they did cos one of my first experiences after having really bad eczema I was in school for first day, and I remember this girl making a really bad comment towards me, cos back then I still used to wear t-shirts and cargo pants, walking around as I normally did before I had eczema. And those comments sort of caused me to be the sort of self-covered self I am, so I always now wear long trousers, long sleeved tops and… It r-really would have helped if a doctor would have said, "Look, if, if you did go back to school in this state, you may get a few comments or something like that; just be wary," and stuff like that. It would’ve helped, but I got no warning and there's sort of, not bullying, but sort of nit-picking, almost sort of alienating feeling that of some of the comments people made after seeing my condition was really, really hurtful when I was…especially when I was young, it was really hurtful during that time  yeah.

Shams' mum took him to doctors’ appointments when he was little. He listened to the doctor and translated for his mum.

That was the sort of, my first taste of sort of random independence where I had to start translating for my mum cos there would be occasions where doctors could not get translators or interpreters in. So, it would kind of end up being my responsibility to, having to make sure I understood what I had to do with certain creams and how to use them. My mum also had to understand it, and it was really difficult in my early years cos admittedly I was naïve; I was a child so half the time I didn’t pay attention, or I ignored all the doctor was saying which usually brought back problems later on when you got the medication. Fortunately enough obviously medication has the instructions written on but if a doctor has sort custom instructions, like specifics.  

So, he'll say like sort of ten millilitres of this, or something like that, and if a prescription only says, 'Take it twice a day,' that’s when the real problem kicks in. Medication may say take it twice day, but it won't specify how much you're meant to take and if I haven’t been paying attention that’s going to make a big prob…that’s gonna cause a big problem to a dosage or what I take.  So, it’ll later result in having to call back the doctor and my-myself being there present, phoning the doctor up and saying, "How does so and so work cos I did not catch you earlier?"

Shams explains about the difficulties he has when putting treatments on his back, especially when eczema makes it difficult for him to move.

A worst place I've ever had was on my back sort of in-between my armpits and my back, and I'm trying to find…especially when I used to apply medication, when I'm trying to find the right area. I mean sometimes you end up applying medication on the normal part of your skin and you turn yourself in the mirror and see that…that place you're meant to apply hasn’t applied. And the other places would be sort of back of the knees, arms areas. Those are not painful to apply medication to but sometimes when eczema becomes really worse; my skin becomes sort of stiff and hard to move. During those times it's hard to sort of bend your arm and apply it to yourself. Well, you're just kind of stiff armed in a sense, you can't move.

Shams prefers a combined steroid and antibiotic cream, usually prescribed if the doctor suspects the eczema is infected.

One example is, there's a cream called Fucibet that, when I was young I was prescribed to a lot, when my eczema was really bad, and I still insist upon getting it every time I go to the doctors. I really don’t like using any other certain ointments or steroid creams. And it's because I've used it before; I know to the extent it works, but the doctor’s sort of argument is that apparently such creams have a negative effect, such as a skin thinner, as it may thin my skin that, to which I always argue to a doctor I would rather have slightly more thinner skin than have to deal with eczema. But the other issue with that is doctor…doctors have also said that long term use of a certain steroid will sort of decrease its impact which may or may not be true but I've heard from doctors that if I use a certain cream consistently enough it'll get to a point my body will reject it, it won't make much of a difference to work for eczema.

And obviously I can't argue it against the medical professional who obviously has like a sort of degree and Masters in their field, and I really don’t have any sort of merit to ponder about those questions.

Shams is cautious about trying out remedies recommended by other people.

I've always stuck to my doctor's sort of “do this, do that” – I haven’t really tried to innovate for myself. And sometimes I do worry about innovating – there have been times I've tried to innovate, or listen to people who don’t know what they're talking about, and I'll be adamant. It's mainly family members who suggested “try this or try that; this may help; I know so and so who've tried this sort of treatment” and at the end of the day it can backfire. One of them was some sort of almond based cream, and I'm allergic to nuts. I remember smearing it on an area of my skin – it solidified so I had to break it off, wash it off and I thought, 'Oh this might have…' I looked underneath and it was just swollen…and red, and I thought, 'Well this was useless and pointless.' 

Shams’ depression and eczema link together.

Depression sort of came about from the sort of other circumstances but it somehow seemed to also have a, a sort of relative influence on my eczema. So, when my eczema was worse I'd feel sad, and you know in turn probably being sad or stressed out would make my eczema worse, and they'd both conflict, make it even worse. And maybe some occasions, or many occasions where I've been down and depressed cos of my eczema, especially when it does flare up, and I have to wait for an appointment cos some…I have, in previous times, made emergency appointments where doctors have turned me away citing that this is not considered a emergency situation, so you have to just go back home, make an appointment as everyone else, and it has frustrated me, stressed me out; in turn led to depression that  causes more… well more flared up eczema. They both kind of worsen each other out.

Shams uses wet wraps to keep his eczema moisturised when doing sports.

For example, I had one; I had one comment I remember looking at where there was this girl footballer – she was probably a couple of years younger than me, but she commented that during football she would have like these wet bandage wraps around her legs. She suggested that if anyone has major eczema in sort of joint or some joint areas, she would say get a wet bandage, wrap it around your leg with a dry and try and sort of knee-guard as support over on top; hold it in place just to stop the sort of friction between your skin - little suggestions but like but, you know accumulate to helping, you know everyday tasks got more easier, more sort of doable in a sense yeah.

Is that something that you tried with the wet bandage?

Yeah that was one thing I also got from the doctors as well but I didn’t know in what context to use it. I usually put on wet bandages and just lie in my bed and think “I can't do anything for the rest of the day”, but I didn’t realise if you sort of like…for example, I used to try out boxing, so I would wrap around my wrists and my arms, tie them up and box away. I'd take em off and see that my arms are still moisturised; it hasn’t dried up, cracked or swollen. And it's been really helpful these little suggestions especially when, years or days I've been training, and little suggestions to keep the eczema out of focus, out of a way from interfering has been quite useful.

Shams talks about how his eczema makes it difficult to spend time with friends.

A lot of times eczema's really bad. I ju-…some days I just won't leave the house. They'd phone me up and say, "Hey come along, we're going to this and this," and especially difficult when they're going to like a physical activity. I remember once they went bowling and they forcefully made me go with them, in a nice way, and my eczema was really sore that day; I was all sort of scrunched up, I could barely move, and I had to play bowling with them, and it was just difficult. Overall there have been many activities that I’ve missed out on. One was this place offered an opportunity to go paint-balling at one point, but I couldn’t go cos my eczema was really bad that time and I just wasn’t feeling that well. I knew if I went I'd probably become even worse so I had, had to just stay at home and it is really annoying especially when you go on things like social media later on and you see they’ve had a great time but you're just stuck at home, you know, applying your medication or waiting for your next doctor's appointment.

Shams' mum took him to doctors’ appointments when he was little. He listened to the doctor and translated for his mum.

That was the sort of, my first taste of sort of random independence where I had to start translating for my mum cos there would be occasions where doctors could not get translators or interpreters in. So, it would kind of end up being my responsibility to, having to make sure I understood what I had to do with certain creams and how to use them. My mum also had to understand it, and it was really difficult in my early years cos admittedly I was naïve; I was a child so half the time I didn’t pay attention, or I ignored all the doctor was saying which usually brought back problems later on when you got the medication. Fortunately enough obviously medication has the instructions written on but if a doctor has sort custom instructions, like specifics. 

So, he'll say like sort of ten millilitres of this, or something like that, and if a prescription only says, 'Take it twice a day,' that’s when the real problem kicks in. Medication may say take it twice day, but it won't specify how much you're meant to take and if I haven’t been paying attention that’s going to make a big prob…that’s gonna cause a big problem to a dosage or what I take. So, it’ll later result in having to call back the doctor and my-myself being there present, phoning the doctor up and saying, "How does so and so work cos I did not catch you earlier?"

Shams has fallen out with friends over hurtful comments they’ve made.

I've had a lot of issues with friends and I’ve had a lot of conflicts with friends where they make a comment about my eczema. I remember one of them was a friend when I was younger, he called me 'Itchy and Scratchy' cos of a TV show from The Simpsons or something, and during that time I remember I was really sort of, not ill that day, but my eczema was really bad that day and I was in a depressed mood. 

And I remember turning around and getting into a sort of really bad fight with him that day. Had to be broken up for other friends and since then we've never talked. And a lot of my friends, we've haven’t always had physical conflicts, but after a while I stray away from them; I distance myself away from them.

Shams’ eczema causes sleep problems which has knock-on effects in school and sixth form.

I've had a lot of issue with sleep. I usually have a problem with sleeping during the day even to…even till this year I still have problems sleeping at night. I sleep during the day. I've had problems where I've fallen asleep in lessons, or I zone out during lessons for about half an hour so then suddenly the teacher would call my name, or someone would say my name and I'd just pop back and be like “what the hell's going on?”

Attention levels would drop or just go up and down. At some point I paid a lot of attention and at another point I would just completely blank out, don’t know what to say. And there have been issues where I have fallen asleep in exams, not major ones but sort of mock exams and so forth, where I was so exhausted I could not sleep a wink. I would rush to finish the paper just so I could sleep for the last ten minutes or so forth.

And it is frustrating a lot of the time when things like schools or doctors can't really sympathise with the idea that, you know sometimes it is difficult to get up in the morning with it. It may be worse than usual, stuff like that. I’ve had teachers comment and tell me that, you know you’ve got eczema, and they give me an example of “so and so” who has something else who still gets up a morning, and will try…and give me a relative comparison to say, "Look, why don’t you just man up and do it," and some days you can't do that; some days it is just difficult. 

The PE/sports kit at Shams’ previous secondary school led to some difficult situations.

Their requirement was a white t-shirt and black cargo shorts or pants, and straight away I had a conflicting issue with them because I wore a white full-length top. They only said white polo t-shirts, and I would usually get into arguments with them saying "Well, no I have to wear this, and this and that," and usually they would [door slamming] have to push me to a certain limit where I was take them…have to physically take them to a corner and say, "Look Sir, or Miss, I have eczema; I don’t want to show it in front of these people." Sometimes some of them, well most of them would be sympathetic with me like, "OK, I understand that’s fine." But I've had on occasions certain teachers who have completely ignored that fact and said, "Well it's just eczema [door shuts], you have to get on with it," and they haven’t sort of considered the sort of social impact that causes when people make some comments about eczema, they don’t really understand what it feels like; how some of those comments are really sort of hurtful a bit, you know, a bit teasy at you.

Shams would have appreciated his doctors talking more about the social and emotional impacts eczema can have.

A lot of ‘em straight away from mentioning stuff for like the…I don’t know what…if it's deliberately or unintentionally, but none of them mention the sort of social implications that eczema would have, and I would be more happy if they did cos one of my first experiences after having really bad eczema was I, I was in school for first day, and I remember this girl making a really bad comment towards me, cos back then I still used to wear t-shirts and cargo pants, walking around as I normally did before I had eczema. And those comments sort of caused me to be the sort of self-covered self I am, so I always now wear long trousers, long sleeved tops and. It r-really would have helped if a doctor would have said, "Look, if, if you did go back to school in this state, you may get a few comments or something like that; just be wary," and stuff like that. It would’ve helped, but I got no warning and there's sort of, not bullying, but sort of nit-picking, almost sort of alienating feeling that of some of the comments people made after seeing my condition was really, really hurtful when I was…especially when I was young, it was really hurtful during that time yeah.

Shams is grateful for the extra support from some of his teachers at school and sixth form.

They’ve provided me with extra resources; teachers who are aware of my situation who've actually been more sympathetic in previous years, who understand what I'm going through, would usually put aside some work for me. In days where they know I'm off ill, more than usual, they'd put aside a few bits of work or they'd go out of their own way, probably stay a, another hour or so after their work time ends just to explain something to me – make sure I understand it, and I find that really helpful and I really appreciate it because understandably some days I can't attend school. I find it really difficult, and knowing that there's a teacher or someone there who's willing to go out their way to help me get through this, get through my studies –it's a really good feeling to know that.

Shams’ prescriptions are free during sixth form, but sometimes has to buy ‘emergency’ treatments.

But main problem was, were sort of emergency situations where I needed medication quickly but some of the doctors or repeat prescriptions are on some hold or have to wait two/three days. In those cases I'd have to rush up to a pharmacy and buy the medication that I’d usually buy. I remember some moisturisers costing about twelve/thirteen pounds, or sometimes there was this anti-allergen tablet called cetirizine hydroxide, and that…a pack of that cost about ten pounds alone. So that with moisturiser, about twenty quid right there.  When I was young that wasn’t really a problem, but as I got more older and independent living on my own, it's become a big problem especially since I have to manage my own money and sort of  unexpected…costs like those are really problematic for a person like me, and probably would be for anyone else in the same situation who has to manage their money and suddenly realise sort of twenty/thirty pounds on eczema medication, which in about two/three days we could have just got from a doctor. 

But at the time it was really sort of essential for, for them to keep going.

Shams wants to be actor but thinks it will limit the roles he can play.

And I think that would kind of, applies to [bang] future jobs that I want because I really want to try my work at acting; I want to be an actor, but problem is…if my skin is let's say flared up on a certain day that means I can't do a role or can't do what I'm asked to be. Obviously the directors would just cut me off straight away; they’ll find someone else who is more dedicated and more stable in a sense of doing the job. That’s what sort of concerns me about getting future jobs.

Is that something that you’ve been able to speak to maybe like a careers advisor or somebody who's gone down that path of drama and acting?

I haven’t really met, aside from my drama teacher, who've mentioned that acting is inhibited by physical appearance. Although I have seen sort of a pattern of where actors need to look their best for certain roles and things, and I've always…cos I don’t look as physically perfect as others; I've always looked for imperfect roles to play. I remember when we had plays in schools I would try and play the villain – someone who had more justifiable for my sort of appearance [bang]. And it becomes really difficult trying to look for acting jobs that call for that sort of appearance. I remember looking for acting directories – people who are asking for jobs and looking at the sort of description of a person and finding that I don’t match it. And not just because of my skin colour or my height as such, but also my sort of skin condition.

Shams uses wet wraps to keep his eczema moisturised when doing sports.

For example, I had one; I had one comment I remember looking at where there was this girl footballer – she was probably a couple of years younger than me, but she commented that during football she would have like these wet bandage wraps around her legs. She suggested that if anyone has major eczema in sort of joint or some joint areas, she would say get a wet bandage, wrap it around your leg with a dry and try and sort of knee-guard as support over on top; hold it in place just to stop the sort of friction between your skin - little suggestions but like but, you know accumulate to helping, you know everyday tasks got more easier, more sort of doable in a sense yeah.

Is that something that you tried with the wet bandage?

Yeah that was one thing I also got from the doctors as well but I didn’t know in what context to use it. I usually put on wet bandages and just lie in my bed and think “I can't do anything for the rest of the day”, but I didn’t realise if you sort of like…for example, I used to try out boxing, so I would wrap around my wrists and my arms, tie them up and box away. I'd take em off and see that my arms are still moisturised; it hasn’t dried up, cracked or swollen. And it's been really helpful these little suggestions especially when, y- years or days I've been training, and little suggestions to keep the eczema out of focus, out of a way from interfering has been quite useful.