Sources of information and support about psoriasis
- medical professionals, including referrals for professional counselling
- the internet: websites, forums, discussion groups, social media, blogs such as NHS Choices and the Psoriasis Association (charity organisation) webpages
- documentaries, books, pamphlets (including ‘patient information leaflets’ for medications)
- family members
- friends and partners
- school and university e.g. teachers
- work (e.g. Occupational Health services, colleagues, employers)
- others with psoriasis – including those online (e.g. posting in forums)
- religion – some found this was a source of support
At all stages of having psoriasis, from the first symptoms onwards, many young people looked online for more information. There were mixed opinions on whether it was helpful or not to self-diagnose before going to a doctor. A few people knew of psoriasis and skin condition charities, and had looked at their websites and social media accounts. Hannah says she would like to fundraise for a psoriasis charity in the future. Others weren’t aware that any psoriasis charities existed. There were some things that young people hadn’t been told by their doctors, including information first heard about when looking online, reading a leaflet, from alternative therapy practitioners, or through friends with psoriasis. Russell’s GP gave him a general leaflet on psoriasis but didn’t mention anything about the role of lifestyle (especially diet). Lola learnt about associated health conditions, including psoriatic arthritis through internet searches, which left her wondering “what have I got left to find out?” Most people said the emotional side of psoriasis wasn’t talked about in their medical appointments as much as they would have liked.
Some people looked online to find out about others’ experiences of having psoriasis, seeing doctors and using treatments. Adam feels that reading other people’s stories online “empowered” him to keep seeing GPs at times when he felt little progress was being made. Damini liked seeing other people’s ‘before-and-after treatment’ photographs of their psoriasis. Learning about others’ experiences helped some decide about treatments to try, such as phototherapy and systemic medicines. Hannah had used American forums and found out about treatments used there, some of which later became available in the UK. A few said that they had looked online for home remedies. Family members sometimes looked online about treatments on behalf of the person with psoriasis as well. Online discussion groups and blogs were usually seen as a helpful addition to other forms of support (such as from friends, family and partners, and professional counselling). Lucy liked the blog of ‘Flaky Fashionista’ which talks “about different clothes to wear for your psoriasis and hairstyles and make-up and she’s fab.” No one we spoke to had been to a face-to-face support group about psoriasis, but Damini and Lisa joined Facebook groups for people with psoriasis where they can connect to others and hear about their experiences of having psoriasis. Online emotional support could be helpful, especially for those who didn’t know anyone else with psoriasis in their ‘real’/offline life. It could be reassuring to know that the condition is more common than they had first realised.
Sometimes people met others with psoriasis through school/university, social circles (friends, partners), family members, work colleagues and medical waiting rooms. Swapping experiences of trying different treatments (like steroids creams and phototherapy, as well as alternative therapies) was valued. Lucy discovered some of her friends also had psoriasis when they responded to a blog post she had written about her experiences. Not everyone felt they needed or wanted to talk to other people (online or in ‘real life’) about their psoriasis. Some didn’t think that they would benefit from doing so or were too nervous about it. A few people said they would have liked more support early on, but felt that they didn’t need it now that they are older and have learnt to manage their psoriasis.
Some people who had used the online groups had read others’ posts but didn’t write anything themselves. However, a few had and this includes Hannah who posted about her positive experience with biological injections. Others had blogged and Carys used her closed social media to “vent” when she felt frustrated about her skin. Downsides of looking online for information and support were also mentioned. Some pointed out that not everything you read is true or helpful and cautioned about scams promising a ‘cure’. Abbie found conflicting advice. A few people had looked up images of other people’s psoriasis, which could be worrying and upsetting. Adam found it off-putting when he saw a psoriasis support website that he didn’t think had been updated for a long time. A few people felt that there should be more tailored information and support for young people. Megan thinks an online “support group for teenagers” would be good, as most of the things she found online were for older adults and so missed big topics for young people (such as school life). Ella would like to see more online video tutorials about applying make-up specifically to cover psoriasis on her face in a way that wouldn’t irritate the skin.