Lizzy Rose is an artist with a diverse practice spanning writing, video, photography, ceramics and curation. She currently lives and works in Margate in Kent. She was Assistant Curator at artist-led space, LIMBO arts in Margate from 2012-15 and She is now part of the programming team at CRATE, an artist-led studio space and project space in Margate, Kent.
I want to write about myself and other women who expose their body over the internet. I don’t mean pornography, I mean women who post photos of their surgery scars and stoma bags.
Crohns disease is an illness that typically affects teenagers and stays throughout your life. Every Crohns patient is unique because several years after being diagnosed it can affect you in such a multitude of ways–you end up sharing very little in common with anyone else other than a few key phrases: sickness, pain, surgery, oh and the winner, diarrhoea.
There is whole movement in the Crohns disease community of sharing photographs of surgery scars. I belong to countless forums and groups for people diagnosed with Crohns disease and people post these photographs daily.
I can describe the typical photograph, the frame of the shot is taken up all by flesh with usually a row of staples and blood stretching across the middle of the frame, or a beautiful woman, standing in her pants in her bedroom, in front of a mirror, with a stoma bag neatly tucked to one side.
Being dangerous is a relative term and one I think links closely to bravery. For me I see these women as dangerous. I see them as putting themselves in danger. Speaking out about your illness is dangerous for anyone as it is revealing a weakness to others but these women do it nevertheless because, I think, they know it is important to talk about illness as it is not done enough.
I think the reasons why people share photographs of their surgery are complex, and I don’t want to attempt to read people’s mind but I have a few theories from my own time of being sick.
Crohns disease is truly a hidden disease. Sometimes doctors even have trouble measuring it. It can be buried somewhere down in your small intestine, unreachable by cameras and scans. But you can feel it all the time. Every time you eat you feel something and sometimes even when you don’t. On the one hand this can be very useful. If I get very unwell, I can pretend there is nothing wrong for as long as I can keep it together to escape the situation. There is no tell tale hair loss, or terrible rash, no shortlessness of breath or seizures. It can be frustrating as, long term, you start to wonder if it is all in your head. I was half convinced just before I had my last of surgery (which took over 8 hours) that they would go in and find nothing. Scars of surgery are one of the few outward signs that there is anything untoward going on. They are often the only indication of an invisible illness. These scars do not tell the whole story but they are at least proof that yes, I am not imagining it.
The conventional rationale for the selfie taker seems to be to upload an idealised version of one’s life. Essentially positive marketing for how great your life is. However this theory does not account for the post surgical-selfie. You are not presenting an idealised version of your life, you are presenting a harsh reality, one you are uncomfortable with. In the book Understanding Media, McLuhan describes the selfie as a form of self amputation or self numbing. The selfie is either a way of finding a reassuring image of yourself in a world of turmoil and stress, or it is removing a part of yourself that you find troubling. He describes how the body does this as a reaction to physical trauma, “In the physical stress of superstimulation of various kinds, the central nervous system acts to protect itself by a strategy of amputation or isolation of the offending organ, sense, or function.” He suggests that the selfie is a digital extension of this act of the body. The stress that the body is under in the case of post-surgery selfies is evident. In this case, perhaps the selfie is way of managing the stress and trauma of surgery, by removing the offending body part with a smart phone photograph.
The internet has transformed the experience of being chronically ill. In the past you would have to belong to a support group to find a common ally in your illness but these days you can search a hashtag and find countless people who are experiencing a similar reality to you. Having said this, being sick is lonely in real life. I do not think I know anyone with Crohns disease that I have come across socially after 13 years of living with it. Every sick person is uncomfortably aware of how uncomfortable we can make people just by talking about being unwell. You really have to pick the right person, the right time to talk about your disease. This can be very lonely as for you, a trip to the hospital is as normal as someone else’s trip to the pub. Yet you cannot tell people about it for fear of being seen as negative. This develops into a cycle of keeping whole swathes of your life a secret. And sometimes, I think you just snap and you want to tell people about your reality.
One of the most famous campaigns has been #getyourbellyout. People with IBD were invited to share photographs of their bellies on social media to raise awareness and money for IBD charities. It was set up in response to the #nomakeupselfie, which raised lots of money for charity. These women are confident in the positive impact sharing these photographs can have.
Sahara Fleetwood-Beresford, one of the founders of #getyourbellyout said in an article for Crohns and Colitis UK:
What started out as a campaign to raise awareness of an invisible illness that so many people suffer with in silence has turned in to a campaign of INSPIRATION and UNITY!
However, one of the side effects of sharing these photographs is that they may get picked up by the national news, as happened to Bethany Townsend and more recently Aimee Rouski. Both young women with Crohns disease posted photographs of their surgery scars and stoma bags on social media, which were then published by national news agencies. These young women were thrust into the media spotlight with the full horror of comment sections and public notoriety. The danger for them is very real in this situation. However, I see this selfie sharing almost as an act of protest. It shows a defiance to not conform with society’s vision of the perfect body and to challenge people’s perceptions of illness whatever the dangers to the sharer’s personal life.
I have never actually been brave enough to share a photograph of any of my surgery scars although I have many. The alternative to the photograph being picked up by national newspapers is something much more horrifying in many ways. What if no one responds at all? What if your act of personal defiance, bravery, goes completely unnoticed? What if after sharing this intimate secret, it simply disappears into the swirling void of rolling updates, remaining forever searchable but instantly forgotten.
As Crohns disease typically affects young people, many have grown up with the internet. This may be why the surgery selfie has taken off in our community. Perhaps we are seeing the birth of a phenomenon that will eventually become common place for the generation termed as “digital natives”. The internet will continue to transform the lives of people living with long term illnesses in unexpected ways. I believe these women are advocating a more realistic version of our digital self. By putting themselves in danger they are spearheading the way forward as our digital lives grow to be an ever larger part of our reality.