Emotions and having eczema
Feelings about eczema related to:
- symptoms like skin redness, flaking, and scarring. Some worried about what other people think (about the sight of eczema or whether they could ‘catch’ it). Alice worried people might think she had lice or scabies and was ‘dirty’. Itchiness can be frustrating and trying not to scratch can feel like a “battle” of willpower. Flare-ups can be frustrating as it can feel like all the ‘good work’ put into skin care is undone. Shams found it upsetting when his eczema cleared up but then “slowly and surely it comes back again”. The uncertainty of what the future might hold in terms of eczema was a concern for some people. Some felt it was “unfair” that they had eczema, especially when they knew others had ‘grown out’ of it.
- getting a diagnosis made some people feel shocked, frightened, confused, angry and lonely. People who had eczema all their lives said it had become ‘normal’. Others, such as Jessica, felt relieved to finally have an explanation for their symptoms and were hopeful about treatments.
- seeing medical professionals involved: frustration with repeat appointments and no improvements (especially if they feel their eczema isn’t being taken seriously); annoyance when appointments don’t run on time; feeling blamed and nagged by health professionals; hopefulness about referrals (such as to dermatologists); and disappointment when healthcare professionals didn’t ask about or offer suitable support with confidence/esteem problems. It was important for many that their health professionals understood there can be an emotional side of having eczema. Some people felt comfortable with health professionals they had met many times and trusted them to help. Others felt intimidated and nervous, especially when meeting a new doctor or nurse for the first time. Health professionals sometimes did or said things which made the young person uncomfortable.
- avoiding triggers can mean missing out on the things that other people do. Naomi says it “puts me on a downer” when her friends talk about using bath products that she can’t. Some people worried about coming across a new trigger unexpectedly or being in a contact with a trigger without realising. It can also be hard to identify these. Abid enjoys cooking and would find it difficult to limit his diet in an attempt to work out possible triggers. Some said they would rather do particular activities, rather than avoid them, even if it meant being in contact with triggers.
- using treatments (like emollients, steroid creams, phototherapy) and their side effects or discomforts. This can include: the ‘unpleasant’ feel, look and smell of some treatments which can attract attention from others; annoyance about carrying the items around; embarrassment at others seeing the bottles; fears about over-using steroids; frustration when treatments don’t help or irritate the skin; and worries about treatment costs/money.
The ‘vicious cycle’ of stress and eczema
Stress was a major trigger for many people’s eczema. Others, such as Jessica, weren’t sure if this was the case for them and Gary found only certain kinds of stress made a difference. Some people described their skin as ‘showing’ or ‘reflecting’ their feelings through flare-ups. Abid says anxiety and sadness “physically manifest” on his skin.
Having eczema can be a source of stress. Other reasons for feeling stressed include studying (especially exams) and arguments with friends, partners or family. Stress and eczema can fuel one another in a ‘vicious cycle’: stress leads to itching which makes the eczema worse and causes more stress. Being unable to sleep enough can add to this problem. Mental health and eczema
Some people had mental health issues, such as depression and social anxiety, which they felt their eczema contributed to. A few people had been to counselling offered by their school/college or referred to by their doctor. Katie-Lauren found it helped to speak to a counsellor at college as she says it gave her a different view on things. Confidence and self-esteem
Eczema can make people feel less confident. Jessica said that vulval eczema caused mostly practical difficulties but it also negatively impacted her self-esteem. Having eczema didn’t affect Abid’s confidence too much but he knew that other people struggled with this.
Some remembered when other people had done or said things which made them self-conscious about their skins. They didn’t always use the word ‘bullying’, but examples included nasty comments and being physically forced to show their eczema. There was often the fear that something could be said unexpectedly at any moment. Sometimes the things that people did or said weren’t meant to cause upset, but still did out of ignorance. Even comments meant to be helpful caused people to feel awkward as it drew attention to the eczema. Vicky doesn’t like it when people look at her skin for too long. Gary doesn’t like it when people “pity” him. Negative feelings about eczema can be ‘internalised’ – this is when the person thinks nasty things about themselves, even if nobody else believes or suggests these things. Feeling self-conscious can have very real effects and in many aspects of young people’s lives, such as: school, college, university and studies; social life and hobbies; friendships and romantic relationships; work life; and relationships with family members.
People had different strategies for managing times when they might feel less confident about eczema. Often this involved hiding eczema with clothing or hair styling, though this is difficult for visible parts such as the face and hands. Young women sometimes used make-up but this could be a trigger for some. Others, like Molly, found it highlighted the dryness of the skin. Some people cancelled plans when they felt bad about their skins (their eczema, treatments and/or scarring). Katie-Lauren wears bracelets as a distraction so that “people look at the bracelets rather than my skin”. Shams often makes up other excuses to tell people, such as that he accidentally scraped his skin on a wall. Some people used steroid treatments more than they thought they should in the hope that their eczema would clear up sooner, but also worried about side effects from doing this. Growing in confidence
People said they’d become more accepting and confident with time. Often they thought that getting a bit older helped. Abid regrets worrying about what others thought of his eczema because it put a lot of “mental restrictions” on his life. Hazel and Sarah say they often think their eczema is more noticeable than it is to other people. Counselling had helped some to think in a different, more positive way about themselves. There may be occasional times when having eczema knocks their confidence again, but many tried to enjoy life and find things which made them happy. Gary feels better when he does a lot of walking and it helps relieve stress which, in turn, calms down his eczema. Some people felt strongly that eczema is not something to be embarrassed about. They talked about pressures on appearance and body image which can make people feel bad about themselves. Many thought this had a negative impact on women especially, but that men are affected too. Some felt that ‘beauty ideals’ excluded lots of people, such as those with visible differences as well as skin conditions like eczema. Aisha and Hazel talked about the role of the media and Photoshopping models in advertisements. They challenged these expectations about appearance as unrealistic and unfair. Scarring was also talked about. Aman says he’s no longer concerned with scarring as he’s just happy when his eczema is not too uncomfortable. Anissa used to feel uncomfortable about the scarring on her arms from eczema patches. She doesn’t think “everyone’s going to love” their scars, but she now likes hers because they’re “unusual” “like a leopard” print. Some people felt there were positives that came from having eczema – such as becoming a kinder and more understanding person. Many wanted to help others who are going through the same experiences as they had/have. Talking to others, including those who have eczema themselves, was seen as a good thing (see also ‘Sources of information and support about eczema' and ‘Friendships, intimate relationships and eczema’). Sarah finds there is a “funny side” to having eczema too, which she jokes about with friends who also have it and can relate to her experiences.