More than 2.3 million people worldwide live with multiple sclerosis. The disease affects the nervous system, causing damage to nerves on the brain and spine. A relapse happens when a person's immune system attacks the body instead of protecting it, with symptoms ranging from physical impairments, to sensation issues like numbness and tingling, to cognitive changes, and severe nerve pain. While there is currently no cure for the condition, there are treatments to help keep symptoms at bay, and to stop MS from progressing.
Women are two to three times more likely to be diagnosed with MS than men, making it all the more important to listen to their voices, and hear their stories. We reached out to three women who continue to live full lives with MS, to discuss how the disease affects them, and how they're creating artwork, writing, and photography inspired by the experience of their new normal.
Rhian Elizabeth is a multi-award winning writer that lives in Cardiff, Wales. She's been named one of Wales' Rising Stars, and her novel, "Six Pounds Eight Ounces," was shortlisted for The International Rubery Book Award. This summer she represented Wales at the Coracle Europe International Literary Residency in Sweden. Her poetry collection, "the last polar bear on earth," came out in 2018.
I would like "the last polar bear on earth" to take the stigma out of talking about illness, pain, and supposedly embarrassing things like incontinence. I'd like people to take MS seriously when I write about it, but also to not feel sorry for me. I never set out to talk about MS in general. It just happened to me so I wrote about it. It's just like writing about relationships with lovers, family, friends. If I had a cold, I would write about that.
"the last polar bear on earth" is the first poem I wrote in the collection about a break up. I found myself in an abusive relationship with another woman. I had my nose broken and at one point, during the worst violent episode, I thought I was going to die. So the collection goes from being very much in love, to having all that other stuff happening, to working through blame and shame and the after effects of it all.
I've also got a 13 year old daughter, so that comes up a lot — how much I love her, but also how fucking difficult it is to live with her.
I've had to think about things that no one in their 20s should have to think about. If I go out, is there a toilet there? I can't keep up with my friends. I have to rest because I am ALWAYS tired, no matter how much I sleep. I have to remember to take my medication. I've got a pill box. Old people have pill boxes. Pain sucks.
It's not the end of the world though. Recently I travelled around Sweden for a month. I launched "the last polar bear on earth" over there. It was difficult, I'm not going to lie. It was exhausting and I struggled in the heat and I had to rest when other people were having fun. I've had to make changes to my life in order to accommodate MS but it's still my life. And it goes on.
I'm going to travel more and write about what it's like doing it with MS. [It's] as if MS is some kind of annoying passenger that sits by you on the plane and talks all the way when you just want to enjoy the view out of the window, and then decides to follow you like that every place you go, annoying you for the rest of your life.
Hannah Laycock's contemplative and sensuous work on MS contributes to contemporary photography, and to wider illness narratives. She's exhibited worldwide, and her photo series, "Awakenings," explores her journey through diagnosis to find a new normal in a changing body. Her latest collection, "The Vessel," was recently commissioned by Fòcas Scotland.
"The Vessel" is an exploration of my body, to express feelings about physical touch and intimacy since my diagnosis with MS. How my body errs and adjusts to its changing condition, realizing that there is a duality to a life lived with chronic illness.
The idea emerged from a build-up of experiences from my childhood, and within the last 10 years my dad has endured living with Motor Neurone Disease (ALS). Then, there are also my feelings about the future, of wanting to have a partner and family. All of this has made me question relationships and intimacy.
My work is a pictorial love letter, and perhaps a melancholy one at that, to something that feels unreachable at times. As a woman in my mid-thirties, it's scary, questioning how men might perceive me, knowing I live with a chronic illness, and how that might affect my potential for being able to have a relationship.
The idea of coming to terms with MS feels like that means it has conquered me, and I have had to succumb to its wicked ways. So I fight against it. Its a balance. I have to be mindful of the limits it sets on me. It's a challenge because there are dark moments which leave me with a sense of dread about what the future holds.
Within the last couple of years, I've been looking at the work of Columbia University's Narrative Medicine department. I took one of their weekend intensive courses on the subject in Spring 2018. The medical approach utilizes people's narratives in clinical practice, research, and education as a way to promote healing. This is something I try to advocate within my own practice, telling unique stories through the use of visual language about life with a chronic illness.
I'm in the early stages of creating a body of work that looks at the fragility of the human body through the use of alternative photographic processes and embroidery. It's a way of highlighting how we can take our bodies for granted. Skin acts like a border between the outside world and the anatomy that is contained underneath it.
Any diagnosis is a real shock to the system. Where appropriate, I try to be open with people about my condition. Knowledge is power. Most importantly, know that you are not alone, and that there are plenty of resources and platforms to help people living with MS.
Amy Mackelden is the weekend editor at Harper's BAZAAR, and she's written for Marie Claire, ELLE, Byrdie, The Independent, Hello Giggles, and Bustle. She co-edits Clarissa Explains F*** All, and is developing a project called "MS Is My Boyfriend," about what life with a chronic illness is really like.
Before my diagnosis, I made theatre shows. Not great shows, or even good shows, but I made them. I wrote the scripts, and I performed the words. Once, a male audience member emailed me feedback after a show and told me how he would have done it better. But at another performance, the laughter was deafening. The inconsistency in responses, I'd learn, was like living with a degenerative, and variable, condition.
It was the physical toll of my second show which brought about my first major MS relapse, but I'd only find that out later. I woke up numb from the waist down, with the tightest tingling sensation in both of my legs. An MRI confirmed a suspicion: I had MS, and this wasn't the first time my body had attacked itself.
I assumed that my career was over, that theatre shows were too demanding on my body, and the rigorous schedules of the stage, no fit for a cripple. But I persevered. My producer, Degna Stone, encouraged me to try, and we started working on a new show, this time about multiple sclerosis. I ran focus groups, I sent out surveys, I wanted to know what a show about MS should be from the people who had it. Because when it comes to disability, TV constantly fails to portray what it really means to live in spite of a broken body.
In safe spaces, in front of others with chronic illnesses and lifelong disabilities, excerpts from the show, "MS Is My Boyfriend," went over well. I wanted to make something people would relate to, a representation of a disabled life too often left off of the screen. The first raw snippets explored the uncomfortable moments of disease, like losing my orgasm after a relapse, and developing an irritable bladder. But when I left that safe space, my anecdotes fell flat.
Trialling that work-in-progress at a theater festival went over about as well as Jessica Simpson's movie career. And as for a lukewarm response, that's to be expected with any new work; it was the feedback after that made me recoil, and wonder if it was worth putting my vulnerabilities out there for everyone to hear.
On the way out of the theater, one audience member touched my arm like I was tucked up in a hospital bed, and with sad eyes said, "Hang in there." With the lights up, and the show over, the overwhelming response was pity. (And as any disabled person understands, pity sucks). There was pity for my story, for the fact that I'd awkwardly performed it myself, and there was even a touch of indignation. One person lambasted the attention to medical detail: Why should he care what having an MRI for the first time might be like, and who needs to know about spinal taps?
Only in hindsight do I realize that this resistance to women telling the truth about super awkward real-life experiences is exactly why there aren’t many complex disabled characters in pop culture.
"MS Is My Boyfriend" isn't dead, but it's evolving. Will it be a stage show again? I don't know. But it's clear that, now more than ever, women need to keep shouting as loudly as possible until change finally starts to happen.
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