Pain is a 3am alarm shrieking in my urethra, slamming me awake.
Pain can be hard to understand and even harder to express in words, for those witnessing loved ones in pain and for those experiencing pain. The only time in my life I saw my Dad cry was during one his many stays in hospital following his stroke. As my sister and I arrived one morning, unstoppable tears flowed down his face, Dad trembling, highly distressed, he was unable to talk through the sobs. He's been like that all morning, the man in the bed next to him said. It was emotionally unbearable to see my Dad in so much distress. After quizzing the disinterested nurse, we discovered they had forgotten to give my Dad his painkillers. The daily cocktail that meant Dad could live pain-free in his body and have some quality of life. I cannot even begin to imagine the level of pain my Dad was experiencing. He was a tough man, ex-Indian army.
But that morning (or who knows how long) scarred him. Traumatised him. And there were no words for it. Except his eyes spoke this pain experience for a long time after.
I've always had some kind of pain or the other, whether in my wrists, or knees, or migraines. And just lived with it, around it, and got on with it. But last summer I discovered pain on a whole different level - vulval pain due to lichen sclerosis. A new dis-order to add to my long list of ailments! For three months this pain was disobedient. Unruly. Cruel. I couldn't understand it. And it squatted firmly between my legs. The only way I could describe it was like toothache in my vulva - the kind of toothache you get when you need urgent root canal work. I hated the name of the disorder too - lichen sclerosis. It felt claggy and icky.
Finding the words to describe the deep truth of physical pain is challenging. The conventional narrative of physical pain is clinical, medicalised and often separated to a particular body part. This narrative reduces, invisible-ises and de-normalises chronic pain sufferers. Chronic pain sufferers frequently report being marginalised, stigmatised and disbelieved because pain is... invisible.
I was fortunate because my pain was believed by my GP and gynaecologist. But it was difficult to express my pain to friends and colleagues, most people are much happier talking about a headache than an aching fanny. Pain becomes invisible-ised suffering. I even wondered if I was making it up? I explored this further by writing an essay for my masters exploring the philosophy of cunctipotence, gynaecological issues and creative writing. If pain is an hidden narrative, I discovered that narratives about vulval pain are at the bottom of that hidden pile.
God forbid us women talk about our vulvas. That would be far too empowering. We must either wear huge knickers at all times or allow our vulvas to become a sexualised spectacle for male desire.
Cunt pain - no thank you - keep it hidden, keep it shame.
Translating Chronic Pain using flash illness writing...
Sara Wasson, a lecturer from Lancaster University is challenging the prevailing pain narrative through a project called 'Translating Chronic Pain'. Sara states that, "This invisibility is partly because chronic pain can be hard to turn in to story, thanks to it's jagged unpredictability, and it's resistance to clear causality and cure." Instead she proposes short-form or flash creative works of up to 150 words which expresses a moment or fragment of the pain experience, to help both the person experiencing pain to find a way to express themeself, and to raise awareness amongst health professionals, carers and the wider public.
Sara invited us to use disobedient and non-compliant language at a recent workshop. To not hold back with our words but to really dig deep beneath our experience of pain. Pain is pain - it is not soft cashmere or a whispering breeze. If pain is disobedient then we need disobedient language to describe it. I love being disobedient so that resonated with me.
Creating flash writing felt cathartic and empowering. Picking a singular moment to focus on instead of trying to express the broadness of my experience in a longer prose piece felt doable. It enabled me to look through a microscopic lens and I was startled to see just how intense ONE moment felt. Unpicking the vast detail of this moment made me appreciate just why I was so overwhelmed by my pain experience last year - the multiple moments were just too big altogether, too whole, too consuming. Flash fiction feels like working with individual jigsaw pieces, each piece being a moment that I will slowly build in to a bigger story over time if I so choose. It's also helping me come to terms with my Dad's pain and how helpless I felt over those long 11 months.
Re-languaging my diagnosis...
Sometimes we need to re-label our pains or illness, to claim a sense of ownership over our experience. To be disobedient instead of compliant. Language is powerful. Diagnostic labels can be useful to cluster a range of symptoms so we can get some understanding of our experience, causation and treatment options (or in some cases not). But these labels are also stigmatising, sometimes limiting a person to the sum of their diagnosis. I hate my diagnostic label, it feels imprisoning, not empowering and too limited to medicalised treatments and a degenerative trajectory. It took a while to accept this 'new normal' in my life but I also understand the potential of the body to heal by taking a holistic approach towards the disorder.
I mentioned to a friend that I have a 'cunt-disorder'* called lichen sclerosis. She put it back to me, "do you have a cunt-disorder or a disorderly cunt?' Boom. Language again. I couldn't stop laughing, I have a disorderly cunt! A cunctipotent disorderly cunt, a rebellious and independent-spirited vulva. If it had a placard it would be waving it at some demonstration. Immediately I felt empowered and felt like I could own my disobedient disorder on my terms, not on clinical terms. Therefore, my second novel will be "The Adventures of The Disorderly Cunt - a memoir of disobedience.'
Move over 50 Shades of Nonsense.
* Please note - I use the word cunt in it's etymological, mystical and empowering origins, as a place of female power and potency. This is a word I revere and respect.
Read more on Cunctipotence philosophy by Jane Caputi
Translating Chronic Pain is accepting submissions of short creative works that explores the experience of persistent physical pain. Go here for more information.
A list of support for people experiencing persistent pain.
If you have a disorderly cunt aka lichen sclerosis you can find out more here (a clinical viewpoint). I will be writing more about this soon in a thoroughly non-clinical way.