A friend sent me a link to a documentary called My Skin is Killing Me – it’s about two people with severe skin conditions – a young American boy with Epidermolysis Bullosa, and a young Chinese man with Ichthyosis. It showed the medical and social pain of living with these conditions. Payton, the five year old in America, has raw skin that needs layers of bandages (like Nikki, who featured here last week). Even the slightest touch can cause it to shed. Cheng, in China, nicknamed ‘Fish Boy’ receives extreme intrusiveness in the form of staring and in-his-face ridicule.
My friend asked me what I thought of the documentary. I told her I wasn’t able to watch it in full. While it showed very severe skin conditions, I didn’t find it exploitative or sensationalist – in fact it did not seem like Embarrassing Bodies, nor was it factually incorrect, and so I tried to watch it. This wasn’t acting or a fictional script written by someone who’s never experienced the conditions before. It was real people sharing their own experiences. If I were to be really critical, while the documentary was aimed at being informative, it probably does serve as a lesson to people who have never experienced such physical and social pain – and it did have a little too much dramatic narration and music to drive home the severity of the skin conditions. I was, however, glad that the documentary showed just how important the skin is as a barrier to infection, and just how sore it can get.
The reason I couldn’t watch the documentary in full because of the way I identified with the experiences shown. It was, perhaps selfishly, because my own level of empathy and shared experiences identified with the two people featured in the documentary. I was watching mirrored yet extreme shared experiences. When I saw Payton’s fused feet and his skin coming off during dressing time – I winced and felt my skin tingle, knowingly. The pain must be unbearable. And my eyes moistened when Cheng said people often think he’s a monster. It must be so incredibly difficult dealing with a mass of people having a fear of you.
My friend who sent me the video said to me “I know you deal with staring on a day to day basis.. but there is footage of people literally walking up to him and staring… and there was no shame in the staring.”
I just can’t watch this.
As strong and inclusive as I am, seeing hordes of people staring at Cheng would feel like flies swarming at me. I’d want to swat them away. When many people stare at me al at once, it does get overwhelming.
I’ve got privilege. There’s a barrier between me and the TV screen, and I live in a completely different, and rather diverse, open-minded culture. I’m lucky not to be in that much pain all of the time, not to be surrounded by intense social stigma, and to have incredible medical and social support. The empathy I have for others with similar conditions can make realising the enormity of the medical and social challenges really confronting.
Leisa, who is short statured, wrote a wonderfully reflective blog post about being confronted by seeing her disability portrayed on screen:
“I’ve thought about it a lot over the years and I’ve come to the conclusion that I find it confronting seeing aspects of my own life played out in front of me – either on the screen or in the pages of a book. In daily life I’m kind of in control of what I see happening around me. I know it all happens – the stares, the comments, the poking of the mate in the ribs and having a laugh, the random pictures and videos taken on a smart phone – but I can somehow block it out to some extent and exist in my own bubble of ignorance.
But to see it up close and personal, highlighted on the screen, or written about in the pages of a book is too much and it hurts…and I’m confronting how I really feel about it…and how I really feel about myself and my own physicality. I watched Peter Dinklage walk and I asked the kids, “Do I walk like that?” They were not able to tell me. “What? He’s just walking Mum and so do you.” They didn’t get it. I suppose this is because they’ve always been accustomed to having dwarfism around them whereas me, coming from an average statured family, this is all sometimes a “new” experience for me and seeing another image of myself in real human form is still a curiosity for me. Strange, but true.”
These two paragraphs from Leisa resonate with me a lot. She wrote her post last month but I am still thinking about her words. There is an element of control I have in blocking out people’s reactions and also managing the pain in my every day life, and when I saw pain and cruelty being shown on screen – happening to other people that I don’t even know – I remembered the physical and social pain that I’ve encountered. I wanted their situations to improve so much. Perhaps I took pity on them in the same way I don’t want pity directed at me? While I don’t want a cure for myself, I do want for a cure to ease the suffering of those severely affected.
There’s also the idea of “seeing another image of myself in real human form is still a curiosity for me” – I saw Cheng’s face: the cracks, the inside out eyelids and thickened lips – and saw myself. I see myself in so many of my friends in the Ichthyosis community. I am fascinated by our bone structure, face shape, translucent skin, posture, brittle hair and white smiles. And I marvel that we are all one family.
I’m such a believer in sharing stories. They help others share their own stories and come to terms with their own experiences. I learnt that through running the Ichthyosis Awareness Month blog project.
But sometimes stories like my own can cut close to the bone, and I don’t cope as well as I imagined I would. It’s not that I don’t care or acknowledge others’ suffering. It’s not because I want naivity or pretty packaging of quite messy conditions. It’s because I’ve been there too – and I try not to think about the (relatively similar) difficult times that I’ve had – I just deal with them as they happen. Sometimes empathy hurts, it becomes sympathy. Sometimes I hurt for those I’ve never met. And protecting myself emotionally sometimes means making the choice to switch off situations that I identify with, just for a little while.
Do you feel uncomfortable seeing your medical condition shown on the screen? Does it reinforce the reality or severity of the condition for you?
(PS: I’m so excited to be published on BlogHer today! The health editor loved my Halloween scary face post!)