Family life and psoriasis
- being there to talk to if they’re feeling down
- applying treatments for them
- financial and practical support, including arranging appointments and paying for private dermatology treatment
- researching the condition and treatments (including alternative therapies)
For those who had psoriasis since they were little, parents had usually taken them to see doctors and helped them to use topical treatments. Some people couldn’t remember being diagnosed because it had happened a long time ago, they were very young or the information was unclear. Doctors often talked about the symptoms and diagnosis to the parents, rather than the young child with psoriasis. Megan explains: “I just sat there listening to my mum and the doctor, and I'd only pick up on certain things”. Parents often then had the difficult task of explaining the information to their children. Despite their parents’ best attempts, children sometimes still felt confused and worried about their diagnosis.
Others who developed psoriasis when they were older sometimes asked their parents for advice on symptoms before going to the GP for diagnosis and treatment. Steven showed his mum his scalp when he first noticed skin flaking. Russell says his mum “connected the dots” between symptoms he had a few years before.
- Age at interview:
- Age at diagnosis:
- Louie is 16 years old and a school student. His ethnicity is White English.
I realised it on my scalp, on my head and the doctor said it was some sort of fungal disease which is obviously- we know now it’s not. And they gave me some creams for that and, yeah, I did go to the doctors and they just said it was that and it turned away as something else.
How long did it take for somebody to correctly diagnose it as psoriasis?
Had it for about-, I had psoriasis before someone correctly diagnosed me for about six and a half months, but I had difficulty going to the doctors cos I was young and my mother is a full time-, she works full time so it’s difficult to get doctor hours that correlate with my mums working hours.
So it was very difficult to go to the doctors unless it really got serious and that’s-, by the time it gets too serious it gets pr-, it gets to the point where it’s not easily as treatable because of the severity of it and so it was about six or seven months.
Did the doctors give you anything during that time for what they thought was the fungal infection?
They gave me a fungal shampoo of which didn’t seem to work because obviously it was doing the wrong thing it wasn’t close to be treating me and then they gave me just like a little steroid cream for my face but that didn’t work either.
And that didn’t work either so obviously I went back at a later date.
Parents often helped with psoriasis treatments, especially for young children. Megan couldn’t go on a residential primary school trip as she needed her mum to help with applying her topical creams. A few people said their mums wrote them sick notes so they didn’t have to take part in PE at school. Zara’s mum also contacted her school when she was being bullied about psoriasis.
As people grew up and for those diagnosed when they were older, parents were often less involved in going to appointments. Many young people started booking and attending doctor appointments on their own in their late teens. Lisa says she prefers to go to her medical appointments alone. Zara’s mum travels with her to dermatologist appointments but doesn’t always go in with her. Ella will soon ‘transition’ from a paediatric to adult dermatologist and thinks she’ll start going to appointments on her own. Others prefer to take a parent with them to consultations and ask for their advice when making treatment decisions.
Parents tended to help less with treatments as the person got older, but some help was often appreciated. This included applying topical treatments to difficult to reach/see places like the back and scalp. Megan’s mum used to do her biological injections for her, as she worried she might “muck it up” herself by putting the needle in the wrong place. Parents often continued to research possible treatment options and alternative therapies for their children.
Parents sometimes gave financial support. Lucy’s parents paid for her to see a private dermatologist when she was first diagnosed so she could start her treatment sooner. The costs associated with psoriasis, including treatment and travel to medical appointments, was a pressure on some families. Generally, as people got older, they covered the costs of psoriasis themselves (e.g. prescription charges for those who have to pay and shop-bought products).
Emotional impact and family
Some people thought the emotional toll of psoriasis on them can be difficult for their families too. Megan remembers asking her mum lots of questions when she was younger which she thinks was hard. She explains, “I know I made my mum feel like really upset, cos she didn’t know what to do, and she's a mother and her nine year old child's questioning her about something that no nine year old child should talk to their mum about”. For some, their experience with psoriasis and the support they received had brought them closer as a family. Others felt they had less of a bond because they couldn’t do some activities their parents wanted them to do (for example, wear ‘feminine’ clothing). Many said they were grateful for emotional and practical support from their parents. At times though, some of the things family members said or did caused upset or were unwelcome. There were times when they didn’t want to talk to their family about psoriasis for various reasons: because they didn’t feel a need to, were embarrassed, didn’t want to worry/upset them or didn’t want to come across as ‘whiney’. Some people said they ‘lashed out’ at their family when they were feeling very upset about psoriasis. Knowing of a genetic link to their psoriasis sometimes lead to feelings of blame and anger. Having a family member with psoriasis could also be helpful. This includes sharing information about psoriasis and empathising with things like symptoms and emotional impacts. Lisa’s knowledge about psoriatic arthritis came mostly through her dad’s experience with the condition. However, some found their own approaches to treating psoriasis were very different to that of their family members. Adam says he moisturises his skin much more frequently than his dad does. Other people, like Hannah, were the only one in their immediate family to have psoriasis. No one had children, but some talked about having children in the future and a few people wondered if they would also develop psoriasis. Home life
For most, ‘home’ was a place where they felt more comfortable about their psoriasis. Adam says his parents don’t “bat an eyelid” when he walks around the house topless with his topical treatments on. Lucy likes to take her make-up off at home to “let me skin breathe”. Damini says “at home, I can be myself. My parents know it’s normal that my skin flakes”. Others felt embarrassed about their psoriasis wherever they were. Zara tends to wear shoes and socks, even at home.
A key aspect of home life mentioned by lots of people was housework. This related to symptoms, like skin flaking, and treatments. Many were embarrassed about skin flaking and hoovered often (for Lucy, this was daily). Sometimes family members made comments about skin flakes, which could add to feeling self-conscious. Lisa and Louie both found dark-coloured bedding showed up skin flakes. Louie has a spare set of bedding he can use when he has friends to visit and uses a hairdryer to get rid of skin flakes. Impractical aspects of topical treatments were mentioned, such as waiting around for them to dry and rinsing down greasy baths/showers after using bath oils/soap replacements. Carys found her clothes would get covered in cream, making laundry “never ending”. Abbie has to be careful finding a laundry detergent/washing powder as some irritate her skin. Sharing space at home can be tricky. People may need access to the bathroom a lot to do their topical treatments. Heating was also an issue affecting psoriasis for some, either with it being cold when putting treatments on or, for Louie, getting too warm with a radiator on overnight. A few people had woken up others who were sleeping in the same room by scratching so much.