Photo taken by Oscar Vinter

 In December 2019 I took part in Behind The Scars:

"Behind The Scars is a photography campaign that celebrates scars of all shapes and sizes, and the incredible stories behind them. The series is photographed by Sophie Mayanne and began in April 2017. Since then, Mayanne has captured over 400 scar portraits and stories – encouraging many men, women and children all over the world to embrace the skin they are in. The campaign is aiming to capture 1,000 different scar stories in total. The captured portraits are both beautiful and empowering, running alongside moving stories that capture each sitters unique, raw and emotionally fraught experiences. From surgical scars, to accidents – each photo is an act of self love, acceptance, defiance and positivity." 

Quoted from the Behind The Scars website.

The campaign was started by photographer Sophie Mayanne.

All photos by Sophie Mayanne, scroll through to see full portfolio of images 

I am a sick & disabled artist, writer & post-grad student. I have Classical Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder, & multiple comorbid conditions. 

EDS causes fragile connective tissue affecting every system in the body and often causing very unstable joints. After several years of serious & life threatening illness due to neck instability I had a spinal fusion in May 2019 which left a scar along the back of my neck and head. Although I will always be chronically ill, the surgery has given me time & the ability to do many of the things I no longer had access to. 

EDS causes stretchy skin, so my surgical scar will continue to widen over time. My body positivity is in progress & I have to work on accepting & loving my body as it is. However, I am proud of this mark, I have always loved it & do not want it to fade as it reminds me of the work I put into researching my health, advocating for a diagnosis & the kindness of all who helped us access the surgery (which we fundraised for). Before experiencing illness I hesitated to share my artwork or writing, I felt inadequate. I now see how wrong I was & how important it is for sick & disabled women to have their stories heard, whether that's through art, writing, politics & so on. My creative & academic work aims to examine & challenge how the sick are treated & seen in society. 

Like many chronically ill women, I suffer with PTSD from not being believed & being rendered powerless to medical paternalism. I still find it difficult to be in medical spaces or thinking about the years before my surgery, where I lived in an extended trauma. My scar does not trigger me though, as it represents an instance in which eventually I was listened to & believed, an instance in which I did not feel powerless. 

Although I will never be able to look directly at my scar, I can trace the indent, now covered in peach fur with my fingers & it gives me comfort. The stories of my scar are somewhere in the middle & I look forward to living the rest.

Accessibility is a priority: I am working on improving the accessibility of this website & adding Alt text to all images. I am new to website building, any feedback on how to make this website more accessible is apreciated.

Email: sickofbeingpatient@gmail.com

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