University student Chloe was in and out of hospital between the ages of 14 and 17. Her experiences, and the lack of understanding of the impact of eczema on her well-being, led her to explore ways to help others going through similar experiences. This article was published in Exchange 189, Autumn 2023.
Ever since deciding to study psychology at university when I was 17, I have dreamed of gaining a greater understanding of the psychological aspects of skin conditions, which are very rarely addressed.
I’m a 21-year-old student at the University of Hull who lives in London. When I was a child I had mild eczema, as many children do, but when I was 14, I experienced a massive flare over my entire body. Classically, flares tend to go away after a few weeks, but I had severe rashes, weeping and redness all over my body for years. It fluctuated in severity, but I would never have been able to say that my skin was clear or that I didn’t have the urge to scratch it.
In fact, even now, I don’t think I can truly say that I have experienced one day when I have been completely eczema free.
The unasked question
As well as the eczema, I experienced a myriad of additional conditions, including alopecia, asthma and stomach problems. The culmination of these conditions, as well as the continuous hospital appointments and time spent in NHS waiting rooms, meant I ended up withdrawing from both school and social activities.
Between the ages of 14 and 17, I was seen and examined by so many different nurses and doctors, I’ve lost count. But out of all those professionals, I can count on one hand the number who asked me how my condition made me feel. Not just asking about the itchiness or the sensations on my skin, but asking about how I felt in myself, how it felt when people stared at me in the street, how it felt when friends at school asked questions.
During those formative years, most teenagers already have a difficult relationship with their body and how they look. But to have a major condition that covered my entire face and body, it was hard not to let it define me.
Between the ages of 14 and 17, I was seen and examined by so many different nurses and doctors, I’ve lost count. But out of all those professionals, I can count on one hand the number who asked me how my condition made me feel.
Chloe
Not just a cosmetic issue
When I was applying for university, I had to write a personal statement around psychology for each of my applications. That was when I discovered psychodermatology. I stumbled across a TED talk on the connection between the skin and mind. It explained that there was an emerging field of science called psychodermatology that combined psychology and dermatology. The video explained that skin conditions are not simply a cosmetic issue, as many people assume, and in fact they can be associated with many psychological conditions, as well as impaired daily functioning and strain within the family.
The more I researched psychodermatology to write my personal statement, the more I felt seen. I finally felt there were other people who understood how horrible it is to have no control over scratching your body until you’re red raw, no matter how many times friends and family tell you to ‘stop scratching’. I realised other people knew the soul-destroying feeling that your illness is chronic and you will most likely be dealing with it on and off for your entire life.
Getting mad
But these realisations also made me angry. I was mad that in all those hours at the hospital, being prescribed what felt like every steroid cream under the sun, and even stronger options such as methotrexate (an immunosuppressant), nobody had ever asked me if I was doing okay.
Obviously, the answer would have been ‘No!’ I was a moody teenager who couldn’t go five minutes without ripping her skin to shreds. But I remember going into those appointments thinking it was all my fault. It was all my fault that my skin was on fire, that my hair was falling out and that all my family was thinking about was my skin and any possible treatment that could help, no matter the cost.
Investigating internalised stigma
So, after three years of university, I finally got the opportunity to complete an assignment on a topic of my choice. After a lot of deliberation, I decided to investigate internalised stigma within those with eczema, and whether it has an impact on rates of depression.
Internalised stigma occurs when individuals absorb the negative messages and stereotypes that surround their condition and begin to believe them. As skin conditions like eczema are so visible, individuals who experience them tend to get a lot of comments – mostly unwanted and unhelpful –from many different people.
The second aspect of my project was depression in those with eczema. This is a well-documented area of research, which clearly shows that people with eczema are predisposed to psychological conditions such as depression. However, there was no evidence of scientific research into the interactions between both internal stigma and depression in people with eczema.
A significant result
In my project, I conducted a questionnaire that contained three sections, measuring the quality of life in people with eczema, the presence of depressive traits and internalised stigma associated with their skin condition. I contacted National Eczema Society and they agreed to promote my project on their social media platforms.
I was overwhelmed by the response I received, as I heard from more than 300 participants. If you, reading this now, were one of them, thank you so much – I appreciate it more than you could ever know.
When I analysed the responses, I was pleased to find a significant result, highlighting that internalised stigma has a partially mediating effect on depression in those with eczema. In simpler terms, this means that internalised stigma surrounding the condition can be a factor in causing depression in people with eczema. But the study identified only a partial mediation, so clearly internalised stigma is not the only mediating factor involved.
Boosting understanding
This research project was a specific and niche body of work, but any research into the psychological side of skin conditions helps enhance the wider understanding in this area. For example, clearer evidence around depression and eczema leads to interventions such as cognitive behavioural therapy becoming a more commonplace option for patients. I wish I had access to this type of psychological intervention when my skin was at its worst.
Through my research project and this article, I want to raise awareness around the psychological impact of skin conditions so that other people in similar situations will have the opportunity to feel seen. I hope that the promotion of this issue will encourage future research, which, in turn, will help make a difference to people’s lives.