Today is World Psoriasis Day.
I wrote about my experience with this auto-immune condition here. Writing about it or even telling a friend I have psoriasis is something I thought I’d never do.
I was just too embarrassed.
Up until a few years ago, the only people who knew I had psoriasis were my family, my GP and my hairdresser.
I’ve been spilling the beans to hairdressers in hushed tones since as long as I can remember – almost apologising that they’d have to work on me with such a condition.
Thankfully most are now more educated about psoriasis but for many years, the reaction I got when looking at my scalp would range from nonchalance to fear.
I remember one hairdresser verbalising that she was worried she would “catch” psoriasis from me, even bringing over two other hairdressers in the salon for a group examination.
Way to make me feel a million bucks. NOT.
I used to get flare ups on the skin behind my ears too. I didn’t let it stop me from wearing my hair up – because I’m in Queensland and it gets super hot and sticky in summer – but I vividly remember in my early 20s a male work colleague commenting on how bad it looked.
We were all sitting in the training room, discussing potential strike action (surely way more important) and it was all I could do to hold back the tears as I self consciously tried to cover both my ears with my hands … all the while trying to look as “normal” as possible.
I remember visiting a quite insensitive GP at this time too. I was there to get a repeat script for a lotion that worked. It was liquid so could actually get through my hair to the scalp and helped control flare-ups. I was berated for relying on it (I didn’t, I was there because of a flare up) and told instead to just not stress so much.
The irony being that that GP visit only left me more stressed – and in tears.
As a kid, it was worse, mostly because the psoriasis was more visible – on my knees and elbow and not just on my scalp. And mostly because kids are just so damn awful to other kids who are not perceived as “normal”.
It didn’t help that I would find it impossible not to scratch the psoriasis and often that meant that the scaly red skin patches were either bleeding or scabby as well.
I’m so, so grateful that unlike a lot of other people with psoriasis that mine retreated to mostly on my scalp, where it’s stayed ever since.
Right now as I write this post, my scalp is not happy, flaring up I suspect as a result of the extra work I’ve done over the last few months to get my book written and also keep my blog business running.
I also have a nasty patch under my left breast. I’ve never revealed that one to anyone except Mr SY.
I’m doing so today – on World Psoriasis Day – because the more psoriasis sufferers discuss how it feels to live with the condition, the more collectively we’ll feel that we don’t have to hide it.
This patch can get very sore and the skin can break because wearing a bra creates a lovely, sticky environment. When it’s not flaring up, it’s just a pale red. When it flares up, it’s angry, moist and scaly.
Even as I write those words I feel like apologising for them. That somehow I’ve probably put you off your breakfast, coffee, lunch or dinner (insert which ever applies to the time you’re reading this).
But I shouldn’t. If I didn’t write those words, I wouldn’t be being honest and honouring the true spirit of today.
Today is about not hiding your psoriasis if you’re a sufferer. And if don’t have psoriasis, it’s about understanding the condition and how people with psoriasis feel about it.
Head over to the Got Psorisasis? Don’t Hide Facebook page and spend some time reading people’s stories and the messages of support on this page. It took me all of five minutes of reading to feel at home – to feel that it’s ok to have self-conscious feelings about having this condition and that I’m very much not alone with those feelings.
Yes, psoriasis can be a visual condition for a lot of people but I think it’s also important to consider the impact the condition has on sufferers’ mental and emotional wellbeing.
I know I felt a lot better within myself when I started talking to others about having it. I now take the time to explain that, no, it isn’t dandruff dusting the shoulders and back of my top or dress, it is psoriasis.
When I started sharing my condition here – on the blog – hearing other people’s stories and hearing that I was not alone, all of that helped to.
How each person deals with their psoriasis – and its flare ups – is as individual as the person themselves. What works for one, may not work for the next. Immune systems are funny things like that.
What I’ve had to work at is actually trusting that my GP is up with the latest treatments. A childhood of coal tar-based creams and that experience in my early 20s of being made to feel bad for asking for a treatment that had previously worked for me left me a bit scarred by the whole situation.
I am one of the lucky ones. Mostly my psoriasis is under some kind of control. I know how to treat it if I have a flare up and I know it will calm down – if not this week then maybe next week.
If you have psoriasis or know someone who does, today’s the day to take a moment to “walk” in their shoes.
In this video, Rebecca Stevens (stylist and TV presenter) does just that. Special effects makeup has been applied to her arm and neck to give the appearance of psoriasis and she heads out in public to see how others react.
Do you have psoriasis? Has it impacted how you live your life? How does it make you feel when people notice it?
Coordinated by The Remarkables Group
PS. The infographic I created above sums up my tips for living with psoriasis. If it resonates with you, please share it and help create a greater awareness today and everyday.