Thank you to Hannah Shewan Stevens, writer, photographer and activist, for sharing her story about living with a rare autoimmune disorder (sclerodema) that affects her skin and soft tissue. You can read more about her life on her blog.
From the moment the first lesion on my skin appeared, I started to withdraw into myself. My confidence was already fragile, like most teenagers, so seeing my skin turn on itself sent my self-esteem spiralling.
It took over a year of being a guinea pig to finally get a diagnosis – scleroderma, a rare autoimmune disorder that can affect skin and soft tissue – but it was already too late, my skin would never look the same again.
Every time a new lesion appeared it stoked the fiery self-loathing that lived inside me. I couldn’t stand to look at my rapidly changing skin, so I tried to pretend it wasn’t happening. I stopped looking at my skin and relied on my doctors to tell me when I needed to pay closer attention.
I let them take on the responsibility and mistakenly focused my energy on fuelling the shame I felt. I was embarrassed by what my body was doing and I started to blame myself. I looked at the self-harm scars that littered my skin and I was convinced that the autoimmune condition I was suffering from was my fault.
At 17, I wore a bikini for the first time in years. I barely made it out of the sea before I noticed the stares and the comments I was receiving on all sides. I rushed back to my towel and wrapped it tightly around myself. I made a promise then – that I would never expose my skin in public again. I’m very happy to say that I’ve broken that promise over and over again.
After that experience, I ditched any clothing that might reveal my scars. I was convinced that my skin being on show was offensive to people. I truly believed that the condition I was suffering from, and my mental health issues, were entirely my fault. I thought that I should conceal my scars and protect other’s from seeing them.
It took another three years for things to finally start to change. Following years of internalised self-hatred, I started to peal back the layers and analyse what was really going on underneath. I saw that I was blaming myself for things that were completely out of my control. I realised that it was not on me to ‘protect’ other people from my experiences. I acknowledged that I had just as much right to share my story and expose my skin as anyone else.
But it took a hell of a lot of trial and error to get where I am now. About two years ago, I documented my skin with the help of my partner. I had visions of how I’d tell my story using my scars and I was so excited, until I saw the photos. I broke down instantly and deleted every frame. I made the mistake of trying to walk before I could crawl, so I took a huge step back and reassessed everything.
I started by picking one thing to learn to love every few months, I gave myself all the time I needed to learn to love each part of my body individually. I supplemented this by taking lots of selfies, and dispelling the notion that they made me vain. After a firm talking to from a friend, I realised that self-love was the furthest thing from vanity – it’s self-care.
Then I found Sophie Mayanne’s Behind The Scars project. Before I could second guess myself, I emailed her and asked to take part.
Just arriving was terrifying but within minutes I was stripped down to my pants and posing up a storm. I felt completely at ease and I was thrilled when I saw the final product.
Although it took me a long time to share the photos anywhere, the experience set me down a path of self-discovery. Seeing myself through another person’s lens allowed me to shift my perspective and see my body objectively. This gave me the space I needed to rebuild my self-esteem from scratch.
Over time, I fell in love with all my scars and I embraced every ‘flaw’ on the surface of my body. These days I’m obsessed with the patterns on my skin; they’re like free tattoos!
Our skin is the most important organ we possess and it deserves to be treated lovingly. It took me a long time to understand that, but I’m so happy that I’ve finally fallen in love with my canvas again.
I know that my journey is far from over though! There are many more lessons left to learn and I have to regularly check in to ensure that I’m taking care of my skin and nurturing my self-esteem, but I no longer feel hopeless. My skin doesn’t scare me anymore it invigorates me. My canvas gives me purpose and it has given me the push I needed to share my story openly.