At the age of 13, I developed what initially looked like a bad heat rash. It quickly spread from head to toe and came up as large, red, painful plaques – soon after, I was diagnosed with psoriasis. I have now lived with the condition for over 20 years; the experience has been a living nightmare.
Psoriasis has affected my career, relationships, hobbies, diet and lifestyle. While it hasn't stopped me enjoying my life, I live every day with the knowledge that I'll never be free from it. I've had to accept that it's part of who I am. It is now mostly under control, but I know that it could flare up at any moment, as soon as my current treatment stops working.
Psoriasis isn't just a skin condition; it is actually a disease of the auto-immune system. People often just see the external symptoms, like plaques, and don't realise it can cause other conditions as well. I had just about started living with psoriasis in a more confident way when I was diagnosed with psoriatic arthritis, a type of arthritis associated with psoriasis. Trying to manage both conditions is a struggle.
The psychological impact of living with psoriasis is also hugely underrated. I've been on a long journey coming to terms with living with psoriasis and I now feel confident enough to wear summery clothes and not hide away, but I've not always been like that. I've been in dark places where I'd had enough and felt very depressed, as I didn't have the support I needed. Things got so bad I had suicidal thoughts; I just got to a point where I couldn't cope.
We're all guilty of not discussing the psychological effects of psoriasis enough: sufferers as well as their friends and family. Finding the words to express what I was going through was very hard for me. For many years I'd kept everything to myself, but once I opened up it was like a weight lifted from my shoulders. I was able to have open discussions with family and friends about how I felt and the condition itself. I was surprised by the support I received from everyone. I soon realised they had no idea what I was going through, and were shocked to hear of the severity of the condition. This gave me the motivation I needed to work on raising awareness. Since then I have started a Facebook group and blog. Not only have I been able to help others but this has also helped me. I refuse to suffer in silence any more.
Psoriasis throws up a thousand daily struggles, and these are never more pronounced than in summer. It's my favourite season, but for years it was incredibly difficult to get through. I remember covering up when it was boiling hot, not going on holiday or to the beach. I never learnt to swim; the water was a no-go. The heat would make me feel so uncomfortable – sleepless nights and constant itching were the norm. I remember one night it got so bad, my body felt like it was on fire. I was in tears, covered in psoriasis from head to toe and just couldn't calm it down. Through trial and error I've learnt the trick of putting my pyjamas in the freezer before I put them on – and keeping a spare pair in the freezer in case I need to change in the night.
Unsurprisingly, the phrase "are you summer ready?" means something very different to me. My preparations for summer aren't about bikini shopping or carb-cutting, but about being ready for the sun. The sun causes my psoriasis to flare up, so finding the right protection and using it religiously is incredibly important. Even though I am now confident enough to show my skin, I also make sure I cover up during the hours of strong sun. I wear light, breathable clothing, moisturise two or three times daily (annoying as this is) and make sure I drink plenty of water. So I suppose, yes – I am summer ready.
I now live confidently with psoriasis, but it's been a long journey to get here, and it's made me extremely passionate about people living with psoriasis getting the support that they need.
Anyone living with psoriasis and in need of support should talk to their GP and get referred to a dermatologist - regular treatment reviews are important. QualityCare or the MyPso App are great sources of information, advice and community spirit. You can also find some 'Top Tips' to living well with psoriasis this summer on the QualityCare site that I helped put together along with other psoriasis experts.