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You can find the current article at its original source at http://www.theguardian.com/commentisfree/2015/jan/19/hospitalglam-body-positive-campaigns-chronic-sickness
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| #Hospitalglam shows body-positive campaigns work for chronic sickness too | #Hospitalglam shows body-positive campaigns work for chronic sickness too |
| (about 15 hours later) | |
| Being sick is boring. The occasional week in bed felled by flu is boring. Spending days and weeks every year in hospital corridors and waiting rooms is a whole new level of teeth-grinding boredom. | Being sick is boring. The occasional week in bed felled by flu is boring. Spending days and weeks every year in hospital corridors and waiting rooms is a whole new level of teeth-grinding boredom. |
| This tedium runs through Karolyn Gehrig’s photos, which she posts under the hashtag #hospitalglam on Instagram and Tumblr. They show her reclining in a boxy PVC upholstered chair in a waiting room looking bored; lying upside-down on a hospital bed with her legs climbing the walls; staring through the webbing that holds electrodes on her head. Gehrig was diagnosed with Ehlers-Danlos syndrome in 2003, a connective tissue disorder which in her case is a risk to life. | |
| Gehrig’s poses are that of a model – she could be languidly reclining in any magazine photo-shoot. She’s an artist, she knows her stuff. Only the laminated public health posters, the heart-rate machines on spindly metal poles and the ubiquitous hospital gowns show that anything is amiss, and that’s where the dark comedy lies. Crohns sufferer Bethany Townsend similarly went viral after posting a bikini shot of herself showing her colostomy bags. | Gehrig’s poses are that of a model – she could be languidly reclining in any magazine photo-shoot. She’s an artist, she knows her stuff. Only the laminated public health posters, the heart-rate machines on spindly metal poles and the ubiquitous hospital gowns show that anything is amiss, and that’s where the dark comedy lies. Crohns sufferer Bethany Townsend similarly went viral after posting a bikini shot of herself showing her colostomy bags. |
| It’s never socially acceptable to reply to the question “How are you?” with “Shit, actually”, even when for the vast majority of the time that’s true. The #hospitalglam photos are about statement, triumphantly announcing existence against the odds – and they feel all the more empowering for it. 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. | It’s never socially acceptable to reply to the question “How are you?” with “Shit, actually”, even when for the vast majority of the time that’s true. The #hospitalglam photos are about statement, triumphantly announcing existence against the odds – and they feel all the more empowering for it. 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. |
| When she started, Gehring was the only person using the hashtag. Now dozens of people are posting photos of their otherwise grindingly tedious regular hospital trips, connecting with each other and feeling a little less alone and more accepting of their bodies. More power to them. | When she started, Gehring was the only person using the hashtag. Now dozens of people are posting photos of their otherwise grindingly tedious regular hospital trips, connecting with each other and feeling a little less alone and more accepting of their bodies. More power to them. |
| Usually visits to doctors are rare, trips to hospital rarer still. Your body is temporarily malfunctioning, it is medicine’s job to fix you. But when you’re chronically ill, the equilibrium shifts and your attitude to your body does too. If sickness is a sign of being broken, coming to terms with the fact that you are going to be broken forever is a tremendous blow. | Usually visits to doctors are rare, trips to hospital rarer still. Your body is temporarily malfunctioning, it is medicine’s job to fix you. But when you’re chronically ill, the equilibrium shifts and your attitude to your body does too. If sickness is a sign of being broken, coming to terms with the fact that you are going to be broken forever is a tremendous blow. |
| Nothing brings this home more than the never-ending NHS-headed appointment letters, blood tests, scans and consultations. You know more about your body than you ever imagined – I’ve told no end of nurses that they’ll find it impossible to get blood out of my “bloody terrible veins” (consultant’s medical terminology) without a “butterfly” needle. I’m lucky: I’m as functional as most healthy people despite multiple chronic health conditions. But at the same time, I’m reminded that I could die at any point from an epileptic seizure; or that the genetic condition that causes constant pain could, with little warning, advance to make me lose the ability to walk. | Nothing brings this home more than the never-ending NHS-headed appointment letters, blood tests, scans and consultations. You know more about your body than you ever imagined – I’ve told no end of nurses that they’ll find it impossible to get blood out of my “bloody terrible veins” (consultant’s medical terminology) without a “butterfly” needle. I’m lucky: I’m as functional as most healthy people despite multiple chronic health conditions. But at the same time, I’m reminded that I could die at any point from an epileptic seizure; or that the genetic condition that causes constant pain could, with little warning, advance to make me lose the ability to walk. |
| In Gehrig’s own words: “When we are patients with chronic illnesses, we often get short-term solutions and palliative care instead of the better bodies we want”. Beauty and desirability are bound up with the idea of perfection. 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? | In Gehrig’s own words: “When we are patients with chronic illnesses, we often get short-term solutions and palliative care instead of the better bodies we want”. Beauty and desirability are bound up with the idea of perfection. 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? |
| Some of it is discomfort: not wanting to be reminded of the fallibility of the body. It’s often not difficult to talk about the realities of life with chronic illness and disability, but it’s difficult for others to listen. Regular trips to A&E in an ambulance when you’ve suffered a seizure, annual full-body MRI scans to check the tumours in your spine haven’t grown too much, or spending yet another night lying in a noisy ward with three canulas in your arm seem terrifying to the fit and healthy. But when you’ve spent enough time in hospitals, hearing people scream at night and roam corridors with tubes protruding from every limb, you realise how much the body can endure before it completely succumbs. | Some of it is discomfort: not wanting to be reminded of the fallibility of the body. It’s often not difficult to talk about the realities of life with chronic illness and disability, but it’s difficult for others to listen. Regular trips to A&E in an ambulance when you’ve suffered a seizure, annual full-body MRI scans to check the tumours in your spine haven’t grown too much, or spending yet another night lying in a noisy ward with three canulas in your arm seem terrifying to the fit and healthy. But when you’ve spent enough time in hospitals, hearing people scream at night and roam corridors with tubes protruding from every limb, you realise how much the body can endure before it completely succumbs. |
| The loneliness of chronic illness gets to you most of all. Speaking to friends usually elicits the (understandable) response: “Sounds terrible – I can’t imagine how you must feel.” Well, of course not, and that’s something to be grateful for. | The loneliness of chronic illness gets to you most of all. Speaking to friends usually elicits the (understandable) response: “Sounds terrible – I can’t imagine how you must feel.” Well, of course not, and that’s something to be grateful for. |