Getting a diagnosis and psoriasis changing over time
Age at diagnosis
Some people were diagnosed with having psoriasis when they were toddlers and young children. Their parents usually first noticed symptoms, as for Damini whose mum saw some patches behind her ears at age 4. It could be hard growing up with psoriasis from a young age. Some found that their peers were mean and they had been teased or bullied. Others were older when they were diagnosed. Steven was 17 when his doctor told him he had psoriasis: it was like a “bang, it’s all changed”. Hannah was diagnosed at 16 and found it hard as she didn’t know anyone else her age with psoriasis to talk to. She says “it makes you at a young age have to think about your health, like a lot” compared to most of her peers. Getting the ‘right’ diagnosis
Often people had some psoriasis symptoms for a while before going to the doctor. Russell says he had “touches” of psoriasis before his first major flare-up, which he always thought of as just patches of ‘dry skin’ or ‘sweat rash’ from playing hockey. Simon only became worried when a ‘scab’ on his scalp didn’t go away and became bigger. Louis made a GP appointment “when I woke up and the rash had spread to my face”. People sometimes looked online to see if they could work out their symptoms. For some, a diagnosis of psoriasis was made quickly by a GP or dermatologist. Jack says he was “quite lucky” in that he was already registered with a local GP whilst at university. He went into his appointment fairly sure he had psoriasis and his doctor agreed. Russell’s GP almost instantly diagnosed it as psoriasis when he had a flare-up. Steven asked his mum to look at his scalp after a friend commented he had “really bad dandruff”. As psoriasis runs in Steven’s family (see causes), he saw a doctor and it was soon diagnosed.
Some psoriasis symptoms are shared by other conditions and a lot of the young people had been misdiagnosed initially by their doctors. This could be time-consuming, upsetting and frustrating. Louie and Carys found their skins became worse during the wait for a psoriasis diagnosis and treatment. It could also be expensive having to pay for prescriptions to get treatments for diagnoses, like eczema or ringworm (a fungal infection), that turned out to be wrong. Megan’s and Lisa’s GPs both thought they had chickenpox at first. Megan thinks she wasn’t diagnosed with psoriasis at age seven for a while because “it’s really rare for children under the age of 12 to get it”. It wasn’t until Megan went for tests and the doctors could see that she had “skin growing on top” of patches that it was diagnosed as psoriasis. Zara’s parents took her to the doctors a few times before she was referred to a dermatologist and diagnosed with having psoriasis. Sometimes tests were run to help the doctor with diagnosis. Responses to diagnosis
A diagnosis of psoriasis was devastating for some people. They were shocked to hear they might always have the skin condition. Louie was “distraught” and described the news as “like a dagger in the heart”. Megan “didn’t really understand what it was and why I had it”. She used to ask questions and thinks it was hard on her mum to see her upset. Some people hadn’t realised at first that psoriasis is usually a chronic (lasting) condition and learning this came as a surprise, which many found upsetting news. A few people said they were relieved to have a name for their symptoms which they could tell others and get treatment for. The uncertainty of not knowing, and the fear that it might be another life-threatening illness, meant they were reassured by the diagnosis. Russell thought the word ‘diagnosis’ was too “strong” for his experience of psoriasis though, because it “implies being a serious horrible illness” whereas he described only “touches” of psoriasis on some body parts. Adam wasn’t worried when he was first diagnosed during primary school, but found it became more of a concern when it flared-up at secondary school. Information given with the diagnosis
Several people talked about the information given with the diagnosis of psoriasis. Most hadn’t known much about psoriasis before. For those diagnosed when young, parents were usually given information which wasn’t always passed on to the child as they grew up. Ella remembers asking her parents about psoriasis when she was in secondary school and they explained it was to do with her immune system (see causes).
Some people remembered being told certain things about psoriasis when they were diagnosed. Adam’s doctor told him it was probably stress related (see triggers). There were also some things that people weren’t told which they felt they should have been. Lola was “disappointed” that her doctor hadn’t told her more about psoriasis and worries about “what have I got left to find out”. Psoriasis changing over time
Most people’s psoriasis fluctuated (got better or worse over time). An exception was Louis who had an “isolated incident” of ‘post-viral psoriasis’ which cleared up with topical steroid treatments and hasn’t returned since. Some people were very young when diagnosed—like Damini, Ella and Sofia—and felt they had always had it, although there were usually periods of time when their skin was better.
Most people had times when they didn’t have any patches (such as when their treatments worked well or their skin had ‘calmed’ down), so they didn’t think much about psoriasis and some didn’t need to use any special medicines/products. This changed if they had a ‘flare-up’ which could be upsetting and frustrating. Hannah says she struggled to get used to the fact her psoriasis “kept recurring” as she had expected a quick solution in the early days with the condition. Psoriasis returning or becoming worse after a gap of months or even years meant going back to the doctors for more treatments (e.g. steroid creams).