This is an excerpt from Show Me Where It Hurts: Living with Invisible Illness, a collection of autobiographical essays from Kylie Maslen that explore disability, chronic pain and invisible illness.
In June 2017 I took a selfie in hospital. I can vividly remember sitting up in bed, with my messy hair and hospital gown, giving a thumbs up to the camera. In that moment, when I was well enough (or medicated enough) to be able to sit up and take a photo, I wanted to succinctly tell my friends that I was okay but also that I was going through A Time. I know if a friend of mine suddenly went quiet for a few days without warning I would worry, and I didn’t want my friends put through the same anxiety. But with that amount of Endone in my system I sure as hell wasn’t going to be able to craft one of my usual lengthy, feelings-laden captions.
Karolyn Gehrig captures this sentiment through her Instagram tag #HospitalGlam. An artist with Ehlers-Danlos syndrome (a chronic illness that weakens the body’s connective tissue, which can be life-threatening), Gehrig shares beautifully composed snapshots of the tedium of hospital: lying on paperlined examination tables, being wired to heart-rate monitors, waiting to be seen on triage beds.
In writing about Gehrig’s photos for the Guardian, Dawn Foster talks about the need for body-positive campaigns to include chronic illness. Too often we equate beauty and desirability with perfection—so what happens when your body is beyond able-bodied society’s idea of perfect?
Implicit in the experience of being disabled and living with chronic illness is the inference from society that you are broken, that others in society must go out of their way to include you. Body positivity campaigns always seem to talk about size and never about disability. You’re alive despite everything, aren’t you? Why demand to be seen as attractive as well?
Chronic pain is incredibly isolating. I struggle to balance work, regular medical appointments and day-to-day tasks such as buying food and medicines, while also trying to get enough rest and manage my symptoms as best I can. The first thing to drop off my schedule when my pain is flaring or I need to look after myself more is socialising. Spending so much time alone means a lot of my days are spent at home in tracksuit pants and big jumpers. I need to dress comfortably in clothes that keep me warm and don’t dig in against sensitive muscles, but it’s hard to feel beautiful and desirable when your hair is stiff with dry shampoo and you haven’t been able to shower for days.
A quick scroll through Instagram to see what my able-bodied friends are doing while I’m curled up with a heat pack on the couch confirms that our lives don’t look the same: photos of their kids’ football match, of them lying on a beach on the other side of the world, or at a fancy dinner with their partner, or even just a late-night post of a desk full of empty coffee cups. I’m happy that my friends are living out the lives they want, which bring them joy, and I can appreciate that Instagram almost always shows a curated and stylised version of a life. But the stark contrast between their portraits and the room around me as I scroll, groggy on painkillers, increases the distance I feel between us.
As Foster writes: ‘If selfies and social media are all about the attainment of perfection and the presenting of your best self, disabled people have always been told neither of those concepts are within their reach.’ Most of us now carry cameras with us at all times, and we can share our photos widely with nothing but a public Instagram account and a hashtag or two. Instagram is often criticised for being a platform where we only show the best side of ourselves and our experiences, which can exclude disabled people whose lives don’t always conform to type. So, increasingly, disabled and chronically ill people are looking to build our own networks by generating and using hashtags that we feel a sense of ownership over, such as #HospitalGlam, #Spoonie, #ButYouDontLookSick, #DisabledAndCute and #BabeWithAMobilityAid. We create self-portraits of what our lives look like not only to educate others, but to find our peers, to build important support networks and to feel less alone. The isolation of illness and disability remains, but our images help.
This is an excerpt from Kylie Maslen’s Show Me Where It Hurts: Living with Invisible Illness, published by Text Publishing. Show Me Where It Hurts is available in all good bookstores and digitally. Learn more about where you can get a copy via Text Publishing.
Inform recently spoke with Kylie for the Inform podcast about Show Me Where It Hurts, the importance of online communities, why we should be talking about sex and dating for people with disabilities and her hope that people with disabilities and those with chronic pain may find some kinship in her books.