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 family members about them scratching and eczema being on different parts of the body. Early memories of eczema include parents taking them to see a doctor and putting on treatments, such as emollients. They could also remember things from their childhood about eczema triggers. Hazel couldn’t have sweets at her friend’s birthday parties because they’d flare-up her eczema. Laura’s mum liaised with her friend’s parents when she went over to play so they knew what foods she couldn’t eat because of her eczema and asthma.
Family support with going to the doctors and information about eczema
Those who’d had eczema most of their lives were often first taken to see a GP by their parents. It was usually parents that talked to the doctor, giving information about the child’s symptoms and helping work out triggers. Parents were usually the main source of information about eczema and explained what doctors said back to the child. Many stressed that eczema isn’t contagious, but Katie-Lauren and Vicky remember their little brothers refusing to hold their hands. Georgia used to read a book with her mum to help explain eczema to children. Aadam worked with the Fixers charity to design his own illustrated story book and received lots of positive feedback from parents of children with eczema.
As young people grew up, often their parents were less involved in managing their eczema. Many started booking and attending doctor appointments on their own. Others prefer to take a parent with them to consultations and ask for their advice when making treatment decisions. Jessica’s mum gave her emotional, practical and financial support when she was seeking a diagnosis for vulval eczema.
Help from family members with choosing and using eczema treatments
When the person with eczema was very young, parents usually made the decisions about what treatments to try. This includes both conventional treatments, like steroid creams, and alternative medicines like homeopathy. Vicky’s mum declined her taking part in a clinical trial because of serious side effects. At the time, Vicky wanted to try it but now thinks it was the right decision. A few young people said that their parents worried about steroid creams and cautioned them to be careful.
Some people took more of a role deciding about treatments over time. Family members sometimes made suggestions though. Ele’s gran sends her news clippings about eczema.
Parents often helped with treatments, such as applying emollient. Himesh asks his mum to have a look at his eczema when he thinks it’s flaring-up to decide whether to use steroid cream. As people got older, they often preferred privacy when putting on their creams and parents sometimes helped out in others ways. Lizzie’s mum washed her hair when eczema on her hands made it painful. Aadam’s mum reminds him to take his antihistamines when the pollen count is high.
It was often the young person’s mum most involved, with some exceptions. Naomi’s dad was ‘the main carer of my skin when I was younger’, although she preferred when her mum put on her emollients because she was gentler.
Parents and grandparents sometimes gave financial support. This includes buying things, giving money or lending it for:
- prescription treatments (for those people who have to pay charges) and private treatments
- shop-bought bath and beauty products which were ‘eczema-friendly’, such as moisturisers, make-up and make-up removers
- cotton clothing and bed linen
- eczema-friendly laundry detergent/powder
- seeing a dermatologist privately
- seeing an alternative medicine practitioner and having treatments
Sometimes parents couldn’t or wouldn’t pay for things. Shams remembers adverts online that promised ‘miracle cures’ for eczema. He asked his mum to buy one, but now thinks it was probably a ‘scam’.
Generally, as people got older, they covered the costs themselves. Parents sometimes helped out though, especially for those with a low income (e.g. studying at school, college or university). Molly’s mum sends her back to university with washing powder that doesn’t aggravate her eczema.
Family histories and experiences of having eczema
Some people thought their eczema was genetic and had family members with eczema, another atopic condition (e.g. asthma) or a different skin condition (e.g. psoriasis). Others were the only one in their immediate family to have eczema. No one had children, but some wondered about having children in the future and whether they would inherit eczema.
Older family members with eczema, especially siblings, were often a source of advice and help. Likewise, young people sometimes offered their advice to family members. Naomi typed up some notes about living with eczema for her younger sister who also has it. Aisha thinks her family became more understanding through seeing her grow up with eczema. This benefitted her younger siblings and cousins who also have eczema.
It can be difficult to talk with others about how eczema affects you and not everyone wants to discuss it. Jessica’s vuval eczema meant she had to ‘open up’ to her mum about her sex life but found that she was very understanding and supportive. Examples of emotional support given by family members include:
- Reassurance to feel more comfortable and confident
- ‘Perspective’ and stress management
- Encouragement (e.g. to ask for a referral or try a new treatment)
- Opening up about fears and concerns
- Company at medical appointments and, for Aisha, skin camouflaging
- Speaking up for the young person to professionals when the young person wants to try different treatments
Others preferred not to Tell family members too much. George knows he can talk to his parents about how eczema affects him but says he’s mostly ‘got used to it’.
Some people held back from talking to their parents about the distress of eczema because they didn’t want to upset them. It can be really hard for family members to see a loved one struggling with the physical symptoms and emotional distress of eczema. Aisha says seeing her younger siblings and cousins with eczema ‘evokes the emotions’ she had as a child. Family often shared the happiness when eczema improved too, as for Katie-Lauren when she had red-light therapy.
Attempts by family members to be helpful can backfire and make the young person feel more self-conscious or frustrated. Family stress can also be a trigger for flare-ups. Being told ‘don’t scratch’ is well-intentioned, but can feel like the other person doesn’t understand how itchy their skin is. Sham’s mum told him he had to keep going to school, even when he was in a lot of pain, which made him feel ‘sad’ and ‘angry’.
Eczema triggers and using treatments at home
Identifying triggers can be trial-and-error. Laura’s parents discovered many of hers (such as peaches and lanolin) when she was little. Laura has since done her own research, coming across ‘things that probably twenty years ago my mum had read when I was first diagnosed’. Ele, Cat and Katie-Lauren have been given fragranced bath products as gifts before, which would trigger their eczema, and so they pass them onto their mums.
Some people had pets growing up, however, because of allergies to fur/dander, these were often fish. Aman’s parents got a dog whilst he was at university which triggers his eczema.
The family home was often contrasted to living arrangements at university. Aman thinks his diet is much better at home than when he was at university. Laura found student accommodation generally ‘dirtier’ than home so she had to be careful about triggers like dust. Alice’s mum did lots of housework when she was younger to dampen down her allergies, such as by frequently hoovering and washing bedding. Lizzie’s family home has a water filter and she finds it better for her skin than at university.
Sharing space can be tricky. Himesh’s dad likes to have the heating on and so Himesh uses a fan in his room to keep his skin cool when putting on emollients. People had woken up others who they were sleeping in the same room by scratching so much in the night.
Everyday activities can be difficult when eczema is flared-up. Family members sometimes offered to do household chores for the person with eczema, such as doing the washing-up. Gary’s brother used to make him a cup of tea when his skin was painful and he couldn’t bend his limbs.