Psoriasis Isn’t Just A Skin Condition

Woman With Psoriasis

My name is Stephanie Shepherd and I have psoriasis. I bet some of you are reading this and wondering, what exactly is psoriasis?

Psoriasis is an auto-immune condition, one which I’ve had for over twelve years (I’m pretty much a psoriasis veteran at this point), and believe it or not, I barely remember life without it. Having psoriasis means that unfortunately my own immune system attacks itself (cheers for that) causing a rapid build-up of skin cells to form. Essentially this means I end up with patches of very dry, itchy-red scales all over my body and it doesn’t just stop there. Psoriasis certainly doesn’t shy away from the face or scalp either, both which I’ve had the pleasure of having on and off throughout my journey. It’s something I’ve had to learn to live with, I’ve learnt how I can get it into remission and maintain it but unfortunately, there is no known cure. I’ve had my ups and downs with it but believe it or not, it’s actually helped shape who I am today, and I feel I’m a better person for it.

It hasn’t always been this easy, if you had have told me as an awkward teen who was covered in psoriasis and constantly hiding my skin away (jeans and jumpers in the summer) (yes, believe it) that I’d be writing about my skin and sharing photos on social media, I would have told you to get stuffed. When I was first diagnosed it was such a difficult time in my life, it all started with a tiny patch and before I knew it, I was covered from head to toe. 

I was misdiagnosed at first but then after a second opinion, they were able to determine my diagnosis and oh boy was I relieved. I thought ‘now they know exactly what it is, they can treat it and it will be gone and then I can carry on living my life with ‘normal’ skin’. I couldn’t have been more wrong. I’ll never forget when the doctor said there is no cure and it may never go away. There was no sugar-coating it. They were very blunt and I was absolutely gutted. 

The next few years were spent with many steroid creams and tablets, which didn’t make me feel good and were not maintainable for me. (Quick disclaimer: I’m not a doctor. This is my personal experience, but what has worked for me might be different to what has worked for others, so always seek your own advice.) I tried every miracle cream under the sun and they don’t come cheap, either. Luckily, I had a lot of support from my family, however, not many of my friends knew as I was too shy and embarrassed to talk about it. I spent years having people ask “what’s wrong with your skin?” and at the time, I never knew how to answer it, I’d down play it and say it was like eczema. Eczema seemed like a word that everyone knew which made it easier for me to talk about or, in other words, brush off. I’d just say it goes away and it’s flaring at the moment.  

At one point in school, I had a teacher pull me aside and ask me flat out, “what is this all over your face?” – when I think about a teacher asking a sixteen-year-old girl that question now, it’s so wrong and would just never happen.

I covered up for years. I would miss out on a lot of social events because I didn’t feel comfortable wearing cute dresses, which was hard because I love fashion and looking my best. I would still buy super cute, skin-revealing outfits and put them in the ‘clothes I’ll wear when my psoriasis is gone’ section of my closet, and a lot of the time they’d never get worn. 

I did go through a ‘f**k it’ stage and started going out and not caring what anyone thought and just putting up with the questions. I was going out drinking a lot, eating a lot of take-away and not really looking after myself. My skin kept getting worse and worse. My negative mindset was that there is no cure and so what’s the point in trying? I may as well have fun, enjoy life and be in denial about my condition. That can only go on for so long until I realised that it wasn’t sustainable for me and I was doing more damage than good. My skin was at an all time low.

I’ll never forget that there was one day when it was really hot in Melbourne. I was wearing jeans and a jumper (standard psoriasis outfit) and I stopped at a petrol station. I was so hot I was about to pass out, so I took my jumper off and only had a singlet on. I felt kind of empowered and proud of myself (the heat must have gone to my head). There was a line out the door, but I felt confident and went in to pay in my singlet (I was really living on the edge). When it was my turn, I put my arm out to tap my card and the man serving me said, “what is wrong with your skin?” pointing at my arm. Well, I almost died inside. The line of people behind me were all looking, it created such a scene and I said, “it’s nothing!” and ran out. I remember crying inconsolably in my car, I felt like I had hit rock bottom, didn’t want to live like this anymore, and knew I had to make some changes because I was never this person. I was suffering with a lot of anxiety and felt really low and depressed, yet at the time I never got any sort of professional help for it as I think I was in denial.

One of the biggest misconceptions of psoriasis is that it’s ‘just a skin disorder’. I’ve heard that a lot. But I can tell you right now it affects your mental health too and it’s more than just some marks on your skin. It can be a totally debilitating disease.

After these low moments of feeling extremely miserable, withdrawn and alone, I started looking online and decided to search #psoriasis on Instagram. I was amazed with what I found and from there it was life changing, I finally saw people who had skin like mine and that there was a whole psoriasis community going on. I decided to create an Instagram account dedicated to psoriasis and just like that, @cyapsoriasis was born.

It was my own secret at first, a little hobby I liked to do. But eventually it came up in friend’s suggestions of accounts to follow and I was totally busted. Although by the time that happened, I wasn’t ashamed anymore and totally owned my skin and the account. That account kept me sane, it kept me accountable for my actions, and kept me on track, inspiring me to do better and be better.

I started eating A LOT better because what I learnt through a lot of trial and error is that there’s no overnight psoriasis miracle cure cream, majority of the healing comes from within and what you put into your body matters. 

As a result, I cut out a lot of processed foods and ate predominantly plant-based. I gave up dairy and cut down my alcohol intake (this was HARD) and had to give up a lot of what I loved to see any sort of results and let me tell you, my skin was slowly improving. As corny as it sounds, you only get out what you put in and, in this case, I had to put 110% percent of my energy into my health in order to see progression. Sharing my journey online made it easier and more fun. It was cool to document my skin and see the changes it was going through, it also inspired others to start their own journey. The messages I would receive from people were so kind, I am so blessed to have connected with all these great people. I’ve certainly made some life-long friends due to psoriasis from all across the world.

Social media can get a bad rap at times but throughout my psoriasis journey, it’s something that saved me and helped me grow. @cyapsoriasis is a page that raises psoriasis awareness and is an outlet for me to share all things skin, health and wellness with zero judgments. It’s a safe place for people to go and something I wish I had when I was first diagnosed. A page like this really would have helped me to feel less alone.

Skin care became a HUGE part of my life as well, pre-psoriasis I only ever used makeup wipes (please don’t judge me). Today I’m proud to say I have about an 8 to 9-step skin care routine and it’s something I’m so passionate about. I spend most of my time and money on skin care with no regrets at all. Coming across Go-To has been a blessing. As someone who only used make-up wipes for years, skin care was a little intimidating to me and Go-To changed that. 

Some advice I’d give to anyone with psoriasis is to stay true to yourself, accepting that you have psoriasis is much easier than hiding away and being ashamed of it. Your skin does not define you; people will see you for you instead of seeing you for your skin. Never give up, I know some days are hardbut there is a light at the end of your psoriasis-tunnel. Being diagnosed with psoriasis inspired me to help others and hopefully get them out of the rut they might be in due to their skin.

For anyone who is struggling with their skin, I have also created: @thepsoriasisbible (designed for anyone struggling with psoriasis) and @theglobalpsoriasisdiary (an opportunity for you to share your story). I’m so grateful that there is an official International Psoriasis Month, the condition has come such a long way in the last decade. I can already see how society has become more accustomed to psoriasis and people have educated themselves a little more with it. It has helped to normalise and raise awareness so that hopefully someone suffering won’t get questions from random strangers on the street that make them feel like I did. One life lesson for you if you ever see someone in public with psoriasis (or any condition, disease, disability or difference) never question them about it, just smile and be kind. Oh, and remember to always avoid petrol stations on a hot day.

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