It’s World Psoriasis Day. Don’t hide

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Got Psoriasis Don't Hide World Psoriasis Day 2013

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.

It’s not just the physical

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.

I’m no longer hiding it

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.

Get supportive information

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.

Sharing stories helps

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.

Take a walk in someone else’s shoes

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.

 

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  • MandyP*

    After 15 years in pharmacy and lots of feedback and a fav skin care brand of mine for all types including people with skin conditions is Avene. Amazing stuff all thermal spring water based. Check out the Today Tonight on the young lady story and her amazing results with her psoriasis. Miracles can happen:)

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks Mandy … something else for the trial and error basket!

  • geminigirl

    Id just like to share a great remedy that has actually cured my psoriasis – I suffered for years from it on my scalp and various forms on my tummy. I tried every cream and treatment you can think of until i read a book called the primal blueprint and decided to try giving up sugar and wheat – within a week it was cleared and i am bout free for over a year now! the idea is quite simple, given that a high sugar diet (and sugar includes carbs because your body processes them as sugar) is inflammatory and can manifest as skin conditions. Once these were removed and i included animal fats, moderate proteins and lots of veg and som fruit (no processed stuff), it cleared up – MY GP was amazed and said she would be recommending those simple steps to all of her other patients who struggled with it. Hope that helps!!

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Hi Gemini Girl, I’m so glad that’s worked for you! A big reason I dropped gluten from my diet 3.5 years ago was because of my two auto-immune conditions – psoriasis and hashimotos – and the inflammatory response it can create in your body. I haven’t quit sugar altogether but my diet is 99% processed food free. I know I shouldn’t have any wine but I haven’t gone there yet – just choosing to do long periods without a couple of times a year. While my overall health is better, it hasn’t cleared it. I think it’s very much a trial and error thing for everyone.

  • The Plumbette

    And this is why I love reading your blog. You’re honest and you give such good advice. I don’t suffer from this condition but my skin is so pale and often have red chicken spots on my arms. I would get asked about it when I was younger and it can be debilitating for your confidence but you learn to accept the skin you’re in and I don’t think about it much anymore. Good on you for sharing your personal experience. You’re still perfection in my eyes. :)

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Someone just noticing and asking is enough to shake our confidence Bec … and thanks for the vote of confidence. I’m far from perfect but as I get older I’m actually ok with that!

  • Kathryn

    It’s heartbreaking that you and fellow psoriasis sufferers feel embarrassed and apologetic for a medical condition. It’s a sad indictment of our society isn’t it? I had epilepsy as a child and remember that my mum used to speak about it very secretively. That made me very self conscious and anxious although of course there was absolutely nothing I could do about it.

    Raising awareness is a good thing. The more people know about the disorder, perhaps the less likely they are to judge. Good on you for speaking up Nikki.

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Hopefully we have a new generation of kids coming through where things are actually discussed – it’s good for the kids involved and society as a whole.

  • PrincessEatsPeaSoup

    Thank you for sharing xx

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks for reading x

  • Anna

    I’m a fellow sufferer of psoriasis. Thankfully during my childhood and teen years it resided on my scalp and behind the ears (and it’s the one place I cannot get rid of her), so I didn’t have people asking. Then it started appearing near my elbows and ankles and a little bit on my back. Strangely enough, ex-boyfriends never asked about it, or were worried they would “catch” it from me. Thankfully coal tar lotions worked on me and I’m my skin is patch free for now, but I don’t know what I will do in the future when I decide to have kids as I read that pregrant women shouldn’t use coal tar or steroids for that reason. I tried UVB as well but didn’t work much. Thanks for sharing your story!

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Anna, I found when I was pregnant my psoriasis all but cleared up. It may not be the case for you but you never know.

  • CC

    I’m a fellow sufferer – hair, ears and face – including eyelids which is soooo annoying because I like to wear eye make-up. I haven’t bothered talking to a doctor for possible treatment because nothing has worked in the past. I should try again. Thankyou for the post. x

    • http://www.stylingyou.com.au/ Nikki | Styling You

      I try to talk about it annually with my GP as there are developments in every medical field – hope you can get some help.

  • Nic

    I have had psoriasis since I was 18 – stressing over final year exams. I’ve tried everything over the years – tar ointments, steroid creams and lotions, UVB treatments. Fortunately now it just lives on my head – scalp mainly, but also in my ears and occasionally on my face (and occasionally under my breasts like you, Nikki). I can so sympathise with you Nikki – there have been a few low-lights for me too. When meeting my ex-hubby and we’d had a few dates, having to explain this ‘disease’… in hospital for an unexpected procedure just after my mum had given me a tar treatment (which stains your scalp/skin flakes dark) and having a nurse squeal over the ‘ants’ on my pillow… Hairdressers have varied – anything from looking repulsed, to not blinking an eyelid (thank-you so much to my fantastic new hairdresser Neel and colourist Angelo – you guys are wonderful).
    I’m so pleased this is finally being talked about – on tv, and here – good on you Nikki. Hopefully this will be the start of eroding the stigma. So heartening to read the stories in the comments from others, you are all very brave. Nicoll xx

    • http://www.stylingyou.com.au/ Nikki | Styling You

      My dad have the UVB treatments and it did have an impact. You’ve made my day by backing me with the under the breast thing – and yay to your hairdressers. May they be an example to all. x

  • Janet

    I try very hard to hide from public occasions since my psoriasis now taken up residence on my face and feet. Stress is most definitely a trigger and special occasions which should be exciting and fun have become nightmares.

    Finding the right skin care and makeup are my biggest issues

    Thanks to your post and this awareness campaign I’m hoping that I don’t have to either stay away or explain my life away.

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Hi Janet, yes special occasions should be exciting, not stressful, which just makes a flare up even worse. I’ve only ever had a little bit creep on to my face (under a fringe – which is why I don’t have a fringe all too often) but I tend to just cover that with a little mineral powder. With skincare, other readers have recommended Moo Goo and organic coconut oil.

  • Andy

    What a fantastic post Nikki, and I feel sad that our society is so judgemental. My mother was a long time psoriasis sufferer…mostly on her feet and I remember many, many nights when we would all settle in front of the tele and Mum would start itching and not be able to stop….we all wanted to help her stop itching and I remember as teenagers, my brothers and I trying to find new creams and lotions when we would hit the markets! I do remember being very proud of her when she finally decided to wear sandals and thongs in summer and not worry about what people thought of her skin….it gave her so much relief to be able to have them in fresh air. Sadly she has passed away now, but when she was having Chemotherapy, it totally cleared her psoriasis…how excited she was to not have itchy feet anymore! I hope your recent flare up clears soon and that whilst we may not be able to teach society at large to be non-judgemental, we can make a difference with our children!

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh your poor mum and then to have it as an upside to chemo – doesn’t seem fair. It is our job to raise non-judgemental kids. That’s my aim, any way.

  • Antonia Young

    Like Belinda my psoriasis has gone to the psoriatic arthritis. Unfortunately my countless medications for this have not helped my psoriasis in anyway. My scalp is covered, my ears. Spots on my chest, breast, back, elbow, under arms, groin and now have a new spot in my belly button. I too feel I need to apologise everytime I get a haircut. It also affects my nails which at times can look quite freakish. My biggest concern is for my daughters, I pray none of them ever have to go through it. We live in a very hot climate in Queensland so I know what you mean about the horrible itch. Yes. My doctor tells me not to stress too. Ha ha. We have four daughter’s, three of which are teenagers. Thank you for helping to make people aware of the darn horrible hindrance.

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh Antonia, I know that feeling … so far my kids have not inherited it and I really hope that stays that way. It’s quite stressful being told not to stress, isn’t it?

  • http://www.hairromance.com Christina @ Hair Romance

    Fantastic post Nikki! Shared with my readers too x

    • http://www.stylingyou.com.au/ Nikki | Styling You

      thanks so much Christina xx

  • chrisatpb

    I feel like apologising for all the people who have been horrible to you. Fear and ignorance cause people to react so badly sometimes. As if it’s not bad enough to endure the discomfort of the condition itself, sufferers must also endure silly reactions from people (in the case of the doctor, who should know better!).Here’s hoping for a breakthrough in medical research that will help and that your openness will help non-sufferers to understand and empathise. xx

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks Christa – when I wrote this it was actually a good thing for me to download. Because I never spoke about my condition at the time, I never shared how that GP made me feel but it continues to have an impact on me as I always hesitate to bring up treatment options with doctors at all. Thankfully there have been a lot of supportive GPs since that one though.

  • Teresa

    Hi I’m Teresa I’ve sufferd psoariase so since I was 3 year old ,it’s very embarrassing condition I’ve used nearly all treatments possible,then two year ago I went onto drug called methotrexate my skin was clear and felt it was like cure to me but was having lot problems with nausea I ended up this year being hospitalised twice for few weeks I’ve now changed to newer drug and hoping this will hv same affect but without nausea il keep u updated but just like say don’t spend fortune on internet as treatments on their on people praying on vunlerable can make your condition worse as I have gone desperate measures maself and just like to say people don’t understand unless they have skin condition themselves hopefully one day they be cure ,I’ve sufferd a lot depression with my skin condition to as when it’s bad it makes u want cover up all time and itchiness and pain is unbearable at times I wish Evone with skin condition can get a little break in their life time x

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh Teresa, thanks for sharing your story. I hope your latest treatment helps you … I haven’t had the pain since I was a child but I can still feel it like it was yesterday. The itchiness yes. I agree that it’s a good idea to be careful of spending a fortune on things that play on our emotions. x

  • http://slapdashmama.blogspot.com.au/ SlapdashMama

    I feel sad too that you felt you had to apologise. You are gorgeous. While I don’t have psoriasis, I had really terrible pimples as a pre-teen and early teenager, before anyone else my age did, and was teased mercilessly by some people for it. So I do understand. xxxxx

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh thanks so much and yes, anything that makes you look out of the norm as a kid or teenager really does affect your emotional state too. x

  • Janelle@awhitefarm

    Well written lovely lady xxx

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks so much Janelle x

  • Lisa Mckenzie

    That makes me so sad that you thought you had to apologise for a condition that is not your fault,Psoriasis is like any other skin or health problem that we have to bear and how dare people make rude remarks or make you feel embarrassed about it,don’t you feel bad enough! I don’t suffer from that but I do feel for anyone who does as I know what it is like to have horrible patchy rashes that you can’t do anything about.Thankyou for sharing Nikki I hope your flare up dies down soon x

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks Lisa, it’s this kind of understanding that we need for everyone – even the conditions we don’t see. Hold the judgement, I say, as you never know what’s really going on with someone’s health – only their GP knows that.

      • Lisa Mckenzie

        Yes indeed Nikki!

  • http://www.lovemeagainboutique.com.au/ Bev – Love Me Again Boutique

    Hello my name is Bev and I am a psoriasis sufferer.
    There was a time when I would shy away from telling anyone that.
    For most of my life, my psoriasis has been confined to my scalp but in times of stress, my neck and face instantly break out.
    Today I am bearing the scars from last weeks totally unexpected attack {I didn’t even realise I was stressed}. This time though it moved house and decided to stake its claim on my arm. Until a couple of weeks ago, my arms had been psoriasis free since childhood. I have been sleeping in bandages to help keep moisture in {coconut oil} but unfortunately the scars are here to stay. I know they will fade over time though, and compared to most sufferers I class myself as extremely lucky.

    Skin conditions can cause painful reactions from the uneducated. Thanks for be brave enough to blog about this – it does make a difference when you realise you’re not alone.

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh Bev, thanks for sharing your story and damn you psoriasis for moving on to another spot.

  • Belinda

    I’m 1 of 10 that has now developed psoraric arthritis. Which is a form of arthritis linked to psoriasis that effects the joints and connective tissue. As a sweet twist of fate the immune suppressant drugs I now take have cleared my skin completely. But the years of discretely brushing the flaking from my shoulders and trying not to scratch my scalp are still fresh. I would encourage anyone with psoriasis who starts to get swollen joints to speak to their GP immediately. As I personally went undiagonsed for years and it’s important to get on treatment early. My first signs were swollen fingers (sausage fingers) and sore feet. Thanks for sharing your story!

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Oh Belinda, that is a sweet twist of fate but the pain would not be good. I’m glad you’ve mentioned it here as it might click with someone else.

  • http://Carlyfindlay.blogspot.com/ Carly Findlay

    This, for any skin condition:

    “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.”

    While not psoriasis, I have experienced similar reactions of disgust, fear of contagion and ignorance from people, including hairdressers. The intricacies of the skin do leave me embarrassed, and so, like you, I only share them with the people close to me. The other day I wrote about some of the funny/less known things about my skin, for the first time, and I think it got people thinking that skin conditions aren’t just cosmetic.

    Thanks for writing this post, getting people thinking about skin conditions.

    • http://www.stylingyou.com.au/ Nikki | Styling You

      Thanks Carly – you have long inspired me in the way you have helped others with ichthyosis as you share your story. x