Words by @Hadley Stewart | Photo © Chris Jepson

Until recently Kyle hadn’t been able to own white bed sheets. His eczema is so severe, that he experienced bleeding and scarring to his skin. “If someone says they have a skin condition, people just think, Oh it’s a bit of dry skin or scratching,” says Kyle. “Yet it can be as bad as taking toxic chemicals to try to supress your immune system.” Eczema has varying degrees of severity, with Kyle being one of 15 million people currently living with the skin condition in the United Kingdom. Despite the visible nature of eczema, those living with it argue that the day-to-day impact of living with a skin condition is  invisible.

Living with eczema

Kyle is currently managing his eczema with a weekly injection, steroid creams and moisturisers. Methotrexate injections, which have only recently been offered to patients on the NHS with eczema, were previously only used in cancer care. “It’s pretty hard hitting,” explains Kyle of his treatment regime. Although he now needs regular blood tests, due to the strength of methotrexate and its possible side effects, he thinks it’s a small price to pay, given some of the side effects from previous treatments. “Before going onto this treatment, I used to have to go to the hospital for UV radiation therapy three times a week, in the middle of the working day,” Kyle recalls. “You would come out essentially sun burnt, so my skin would be bright red.”

Liam is also taking methotrexate injections to manage his eczema, however, his road to getting this wonder drug was punctuated by various other treatments. “The nature of eczema is that it can change as you get older,” explains Liam. “During my early teenage years I was admitted to hospital for overnight stays. I would have to have dressings on wounds, and went on various diets, and different drug trials, just to try to calm the eczema down.” Liam was also started on several courses of steroid creams, which have changed his skin’s pigmentation, leaving marks across his arms. “I’ve also had patch testing, light treatment and took oral drugs too,” he recalls. Liam says he is now thankful to have been put onto methotrexate injections, because he feels as though his eczema is currently under control.

Jordan has been living with eczema his entire life. He took various courses of steroid creams, yet was worried about the long-term effects of these creams thinning out his skin. Today he is able to manage his eczema by eliminating potential triggers. “It’s improved during my mid-twenties, because I’ve discovered certain allergens that I need to avoid in food or in skin products, that irritate my skin,” he explains. As an actor and dancer, Jordan also needs to be mindful of sweating during his work, as this too irritates his skin and worsens his eczema. “The health of my skin is also dependent on stress too,” he adds.

Hard to hide

Liam says that when his eczema does flare up, his face becomes extremely red. “It’s quite hard to hide your face.” He pauses, “Well, I suppose now you can put a mask on, but before the pandemic, it was certainly difficult.” Liam admits that he’s had days when he didn’t want to leave the house, because of the way he felt about his skin. “There were times when I was a teenager, I wouldn’t want to leave even my room sometimes. I would get home from school, scratch absolutely everywhere, and just sit in my room looking at my skin. I’d feel ashamed almost, and embarrassed by it.” When moving down to London, Liam recalls speaking about the link between having a skin condition and mental health with a dermatologist for the first time. Although he hasn’t felt the need to access mental health services, Liam says he wouldn’t hesitate in accessing such services.

The stress of living in London can also negatively impact on Liam’s skin. “If I go into a shop and there are mirrors everywhere, I won’t want to look at myself in the mirror,” says Liam of when his eczema flares up. But it would be a human mirror in a bar in Clapham that would remind him that not everyone is compassionate towards people with skin conditions. “I struck up small talk with this guy and he just said to me out of the blue, Oh your face is burning, you’re bright red! I said that I had a skin condition and he kept going on about how my face was burning in the sun.” Liam says he left the bar. “I’m sure the majority of the time, people aren’t meaning any harm,” he rationalises. “But people should just pause and maybe give it some thought before saying things like that.”
education I am normally able to give them.”

Jordan says he’s had “some really bad days” because of his skin. He recalls a particular morning, when he felt insecure about the way his skin looked before meeting up with his boyfriend’s friends for the first time. “It was very warm and so I was wearing shorts and a t-shirt,” recalls Jordan, who says he spent the morning psyching himself up to go out. “My skin looked extremely dry that day and when I kept looking at my arms and the backs of my legs I started to panic. I went home and didn’t meet them. I just couldn’t deal with my intrusive thoughts of, Oh they’re just going to be looking at my skin.”   

Relationships can also be affected by having a skin condition. Kyle has been with his partner for years, and says he is very understanding. “That being said, even when you’re with someone who you’re regularly intimate with, your skin can still feel uncomfortable,” says Kyle. After having UV treatment, his skin would be more sensitive. “If I was touched without knowing that it was about to happen, it would be really painful or uncomfortable. I’d say [to his partner] that I know that it’s really uncomfortable for me, but obviously you don’t want me to flinch every time you touch me on my shoulder, or try to be affectionate.”

When it came to getting undressed with a new partner, Kyle also found it challenging at times. “Whenever I hooked-up with someone I wouldn’t take my clothes off straight away, because I was worried that they’re going to be freaked out by it. You’re thinking, what if it’s inflamed? What if it’s gross? What if they think that’s weird?”

Liam is also in a relationship, yet also remembers feeling self-conscious about how his skin looked when he was dating. “One thing that I found really stressful was if my eczema got really bad in the evening I’d worry about getting blood on their bed sheets if we slept together,” says Liam. “Sometimes I’d flip the pillow over and leave very quickly, out of sheer embarrassment.” He also acknowledges the pressure social media has placed upon gay men in particular, and says that he feels cautious about posting certain pictures, through fear of how his skin looked to others.

Life under lockdown

The coronavirus pandemic not only caused the whole of the UK into lockdown, hospitals too reduced their services to cope with growing patient numbers. Outpatient services, including dermatology, were also done remotely. “I’ve had two telephone consultations since the
lockdown, which have been fine,” says Liam. “There’s an added layer of difficulty in that the dermatologist can’t see your skin over the phone. It’s only when a fresh pair of eyes have a look at your skin, do they tell you that you might need some additional treatment. Fortunately for me, my skin has been fairly stable.”

Kyle’s consultant also switched over to telephone appointments, but he was able to send his doctor pictures of his skin. He has been shielding and only leaving the house to go for blood tests. “Fortunately methotrexate gets delivered by a provider for the NHS so they bring it directly to me, so I don’t have to go to a pharmacy,” explains Kyle. “It’s the same with creams, the pharmacy posts it out to me. You find other ways to get around having to go out.”

When leaving the house, people living with eczema and other skin conditions are now faced with another potential threat to their skin. “The hand sanitizers on the tube or in shops can be extremely damaging for your skin, especially if you’ve got a skin condition. When I have open cuts on my hands, hand gel stings like hell!” says Jordan. He avoids using industrial strength hand gel, and brings along his own when leaving the house. “Before I go out, I make sure that I’m prepared, so I’ll bring with me my own hand gel and then always have some hand cream for when my hands dry out. I think you’ve just got to be a bit more self-disciplined if you are living with a skin condition during these times.”

Kyle echoes this. “My skin does not agree with increased hand washing in any way,” he explains. “My skin is either flaking or broken or sore, so with every bit of hand washing gel, I need to make sure that I’ve got some moisturiser with me.” Despite these gels being harmful for his skin, Kyle says he would still use it to protect others. “Having to use hand gel isn’t ideal. But I wouldn’t ever not wash my hands, even if it was uncomfortable or quite painful. Obviously, it’s not just yourself that you have to consider, you also have to think about the bigger picture of this pandemic.”

Liam uses his own hand gel, and is concerned with the policing of lockdown rules. “There needs to be this understanding and greater empathy when it comes to these regulations and not policing people who don’t comply with mask wearing or using hand gel, especially when there’s a legitimate reason,” he says of people who judge or challenge others. “I think there needs to be more kindness afforded to those people.”

Eczema and other skin conditions are unique, in that unlike other common chronic health conditions, they are visible for all to see. Yet the condition does not exist in isolation; it impacted on the person’s social life, relationships and the way they view their bodies. Liam, Jordan and Kyle all agree that the public perception of skin conditions must change, in order to appreciate the potential severity of skin conditions, and the ways they impact on a person’s daily life. Liam says, “I don’t think people realise the seriousness of what it’s like to live with a skin condition every single day. It’s not just a bit of dry skin, it’s so much more than that.”

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