Family life and eczema
The young people we interviewed often talked about their families and homes. Many lived with eczema since they were young. They had heard stories from...
Friends and partners can be key sources of support. Others preferred to keep their eczema to themselves. The symptoms and the possible emotional impacts of eczema could affect social life and activities shared with others.
People make different decisions about whether to talk about their eczema with friends and romantic partners and what to tell them. A big factor for many was the worry that others might be nasty about their skins. Aadam was picked on at school by peers who said he had ‘old man’s hands’ because eczema caused them to become wrinkly. People were especially wary when their eczema was on visible parts of the body, such as the face and hands, and felt embarrassed about scratching. Others, like Alice, didn’t feel the need to tell romantic partners about eczema as she thinks they would understand already.
A lot of people said their friends and partners were sources of support, but some had bad experiences. This included times when they had been teased, usually when they were young children in primary school. Upsetting experiences in the past with strangers, friends or partners could affect future decisions about telling others. Himesh used to feel very self-conscious about his eczema in front of his friends and peers at school. This used to make him nervous and shaky when talking in front of his class. Aadam thinks his peers thought he was ‘scary’ before they got to know him.
Lots of people worried about what they looked like and some thought teenagers were especially judgemental about appearance. Georgia’s boyfriend is very supportive but she doesn’t want to be intimate when her confidence is low. Aisha used to constantly check her appearance in mirrors. She wanted to ‘look presentable because I don’t want people to see that part of me’. Aisha said she thinks it’s ‘silly’ but found it hard not to care. Most people thought others became less concerned with looks as they got older though – Vicky says she’s become more insecure about her eczema over time (see also section on emotions).
Sometimes people were asked questions about their skin – this was sometimes seen as okay, but other times could make the person feel embarrassed. Cat was asked about sunburn, especially in winter, which was a side effect from phototherapy treatment. Shams tends to keep his eczema a secret from others and puts his emollients in branded moisturiser pots to disguise what he’s using. Laura, Aadam and Hazel had all been asked blunt questions about their eczema by young children. Although comments and queries were probably out of curiosity, it can still be upsetting and make the person feel self-conscious that others have noticed their eczema. Older children and adults usually had more general knowledge about eczema and this was reassuring for many. Lizzie’s friends from home know she has eczema – they don’t avoid talking about it but tend not to because she says ‘it’s not a big deal’.
Lots of people were open with their friends and partners about having eczema. This includes telling them about practical aspects (such as being unable to go swimming because of chlorine) and the emotional side (such as feeling self-conscious). Most found their friends and partners supportive. Alice shaves her arms to avoid the hairs irritating her eczema and has a friend who always complimented her for her skin being so smooth. Molly’s friends used to find her scratching endearing. Still, lots of people remembered times when friends and partners hadn’t fully understood about what it’s like for the person to have eczema. Being told not to scratch had sparked arguments for some with their friends and partners.
However, not everyone talked openly about having eczema with their friends or peers (such as at school). Shams and George were very concerned about what others might think about their eczema and worried it might be ‘used against’ them. Hazel and Gary have friends who know not to comment on their eczema as they don’t like attention being drawn to it.
One thing that could cause anxiety was meeting new people. Gary says he doesn’t feel confident enough to approach young women he’s attracted to when his eczema is flared-up. Aman was put off meeting new people when he felt most self-conscious. Georgia finds it hard to make eye contact and doesn’t like others looking at her.
Some people found they worried less about the appearance of their eczema when meeting new people as they got older. Abid found starting college was good because ‘you have that opportunity to kind of like make friends with whoever you wish to whereas at school you’re a little bit more limited’.
Having eczema can have physical and emotional impacts on spending time with others (see also ‘socialising‘). Physical aspects include when activities with friends and partners might trigger an eczema flare-up or be too painful. Himesh tries to persuade his friends to play sports with him which don’t require as much contact with grass. Stress is a major trigger for Georgia and an argument with a friend can cause a flare-up. Laura has declined food offers before – she doesn’t want to seem rude but knows it would have triggered her eczema. Physical activity like running around or bowling can be too much for Shams when his eczema is painful. Ele and Anissa found that holding hands with their partners was sometimes painful. Georgia worries about leaving skin flakes on other people’s clothing when she hugs them. Sleepovers can be a concern for different reasons, including worry about whether the washing powder used on the bedding might be a trigger (see also sleep).
Partners and friends can help the person with eczema avoid triggers, provide a distraction away from the eczema symptoms and give emotional support. When his eczema is bad, Gary likes having friends over to watch films and hang out. Naomi feels less itchy and more upbeat when she’s with friends. Laura appreciated it when her friends reminded her not to scratch. Other people preferred when friends and partners didn’t comment on this as it could be a source of arguments. Even if said in a well-meaning way, being told ‘don’t scratch’ can feel like the other person doesn’t understand. Ele plans to eat healthier, which she hopes will help her eczema, when she moves in with her boyfriend.
Feeling self-conscious about eczema can be a huge barrier to socialising with friends and partners. Naomi will sometimes ‘shut myself in the house’ but doesn’t ‘want my skin to get in the way of that, of ruining my teenagehood’. Molly says she sometimes overused steroid cream in the hope of her eczema healing quicker so she could feel comfortable seeing friends and socialising. Katie-Lauren tries not to let eczema stop her from doing things but sometimes goes home early on evenings out. Feeling self-conscious about her skin and the smell of emollients stops Georgia from being intimate with her boyfriend.
Many said they disliked having photographs taken and seeing them on social media. Sometimes they wanted to see the photo straight away and, if they didn’t like it, would ask for it to be deleted. Some people had tactics to avoid photographs – such as offering to take the group picture, moving suddenly and hiding behind their clothes, hair or another person.
Hearing about other’s experiences with eczema, including the emotional impacts, was appreciated (see also ‘sources of information and support about eczema‘). Nobody mentioned their romantic partners having eczema, but most had at least one friend with it. Sarah has lots of friends with eczema who she talks to and shares the ‘funny side’ with. She sometimes drops it into conversation that she had eczema to find out if anyone else also has it. Swapping experiences on using different prescribed and shop-bought emollients was valued too. Friends with eczema can also be a source of inspiration, as for Aisha who knows someone with a confident ‘gung-ho’ attitude about others seeing her skin. Sarah says that having friends with eczema helped her realise that hers is often not as noticeable to others as she’d previously assumed.
For some, university was a key place where people met others with eczema. They said this was in contrast to school where having eczema might be singled out more.
Some people knew of friends and peers who had eczema but they hadn’t ever talked to them about it. Some worried that starting up a conversation would cause offense to the other person, but Cat said she would be happy to answer someone’s questions if they had any.
The young people we interviewed often talked about their families and homes. Many lived with eczema since they were young. They had heard stories from...
The young people we talked to tried not to let their eczema 'get in the way' of their school, sixth form, college and/or university -...