Getting a diagnosis and eczema changing over time
A lot of the people we interviewed told us they had eczema since they were very young. Often they couldn’t remember a time without eczema as it had “always” been part of their lives. For some people, it was just “normal” but others could remember times when they’d missed out on things other children around them were doing because of their eczema. Although those who’d had eczema since they were a baby or toddler often couldn’t remember being diagnosed, they may have heard stories from their parents about it. Other people received an eczema diagnosis when they were older. This sometimes came as a surprise because they thought of their skin as ‘normal’ before. Jessica really struggled to get a diagnosis of vulval eczema (eczema on the skin around the vagina) when she was 20 years old. Doctors thought her symptoms could be something else, such as a sexually transmitted infection. Jessica learnt about vulval eczema after looking up her symptoms online, but found it was frustrating trying to convince her GPs that this was the correct diagnosis (see ‘Where on the body? Eczema and different areas of skin’). Eczema changing over time and ‘re-diagnosis’
Some people diagnosed as having eczema when they were young found that it had gone away or affected less of their body for a while as they grew up. This made sense to them at the time as many people had heard that children “grow out” of eczema as they get older. Anissa, Vicky, Evie and Sarah had heard of ‘the seven year rule/theory’: the idea that eczema ‘changes’ (either improves or gets worse) in seven year cycles. For some people, their eczema became less severe as they got older but for others it had returned, often during puberty. Aisha described her eczema as coming “back with a vengeance… like the bad guy in a movie who just doesn’t die.”
Eczema returning or becoming worse after a break of months or even years could be particularly tricky to cope with if the person was no longer in the habit of using eczema treatments or avoiding triggers. When eczema came back, got worse or affected new parts of the body, going to the doctors could be like a ‘re-diagnosis’. Cat’s eczema returned after many years whilst she was at university. She had to register at new GP clinic in order to see a doctor and be prescribed eczema treatments. Information given at diagnosis
Several people talked about the information received with the diagnosis of eczema. For those diagnosed when they were young children, their parents had usually been given information by the doctor. This information wasn’t always aimed at, or necessarily passed on to, the child as they grew up though. It meant that some young people understood how to use their treatments but didn’t know much overall about their skin condition (see ‘What causes eczema?’ and ‘Eczema triggers: what can make eczema worse?’). Some people could remember being told certain things about their eczema. For example, Vicky remembers being reassured that eczema was not contagious (spread to others). Aisha suggests that giving a leaflet to all people when they are first told they have eczema would be good, to cover basic information about the condition. The future with eczema
There is no certainty about what the future holds with eczema. This gave some people hope that things might get a lot better with time, but it could be frustrating and disheartening for others. It can be difficult for young people to hear that eczema might be something they live with for the rest of their life (a chronic condition). Some people remember feeling disappointed when they heard that there is no ‘cure’ for eczema and that they would need to learn how to ‘manage’ it. This includes seeing healthcare professionals, like GPs and GP clinic nurses and sometimes dermatology doctors and nurses. Eczema can change over time, for example affecting different parts of the body or lead to other health conditions like keratoconjunctivitis (an eczema-related condition affecting the eyes) and interact with oily or acne-prone skin.