Content notes: ableism, medical trauma.
Ah, February 2020: before we knew what ‘lockdown’ was and when a celebrity Twitter storm could still make the headlines. Except that in a way, I did know what ‘lockdown’ was: I had been housebound since early the previous summer, when a should-have-been-simple bladder infection wasn’t properly treated and became chronic.
The year before, I had spent six months in and out of A&E, those famously unreliable dipstick tests coming back each time as negative and dismissive doctors reassuring me that ‘some women just have painful bladders’. By the time a doctor believed me and arranged an excruciating ‘cystoscopy’, the infection was raging. Treatment would involve several years of antibiotics, because the bacteria had now buried themselves into biofilms deep inside my bladder wall. The infection led to a rapid snowball of complications from my usual but comparatively friendly chronic illnesses, EDS (Ehlers Danlos Syndrome) and PoTS (Postural Tachycardia Syndrome).
The first thing to get worse was my PoTS. For three months my orthostatic intolerance was so severe that I couldn’t lift my head from my pillow without excruciating pain and pressure in my skull. It felt like my brain was being rung out to dry. My life became wholly horizontal: I lay down for 23.5 out of 24 hours, lifting my head only to sit up to eat. I was in pain, of course, but much worse was the isolation: illness carries an innate shame. I was drawn away from the world and apart from the tribe, and some of the friends I once saw weekly found my new reality too frightening to come and see up close. A month later, the pandemic would bring with it pub quizzes over Zoom, but for now my friends were at the pub.
My life shrank in an instant, like a deflating balloon. Once full of faces and food and cloud formations, my phone camera roll became just screenshots — as if the world I could access now existed only inside my phone screen. I wallowed in that old cliché of the sick and grieving: how can the world outside just carry on? But it was as much a comfort as an insult that outside there were still climate marches, new Prime Ministers, awards seasons and silly outfits. And of course each week there was yet more celebrity drama, which felt to me now —on my back and existential— more inane than ever. But something about this story struck a nerve.
Actress and activist Jameela Jamil was being accused of having Munchausen’s Syndrome, a psychiatric disorder in which a person pretends to be ill to achieve something like sympathy, attention, or kudos.
At first, it was a relief. Unlike a growing list of Hollywood men, she had done nothing criminal. She hadn’t been revealed to be a sexual predator. She hadn’t bullied a junior cast member. As far as I knew, she hadn’t even sold any detox teas to teenagers. But hang on: Munchausen’s? Factitious disorder? I thought she had EDS?
The previous year, I had keenly followed Jameela as, drip-by-drip, she started to share some of her experiences of living with Ehlers Danlos Syndrome. There was no tell-all exclusive; no dramatic ‘coming out’ on social media. I learned that we shared the same illness only through vague allusions on her Twitter and Instagram. Only when an Instagram commenter asked her directly if she had EDS did she confirm it, explaining “I haven’t addressed it before because people suck and say you’re doing it for attention when you talk about health problems publicly… But I’ve also seen how much it has meant to people seeing someone in my position with this utter ball-ache of a condition.” She was right: it meant a hell of a lot to me, from my bed, to see that someone with EDS could achieve so much. I hoped she would continue to talk about it. And at the beginning, she did.
She shared a photo of how, like me, her skin was super stretchy. She described how, like me, after a long day she had to lie with her legs up against the wall. She mentioned her allergies that came and went, and how after a car accident, she used a wheelchair for a while.
Slowly, suspicions were raised. This was surely too many symptoms for one woman to experience! But, from my bed I protested, isn’t the body a whole? Doesn’t one issue lead to another, almost by definition?
By then, everything had escalated. Ex-Broadly editor Tracie Morrissey posted a series of Instagram Stories ‘exposing’ Jameela as a liar. The clickbait of journalist dreams, her Stories quickly caught the attention of the tabloid press. And soon enough, the trolls piled in: Jameela was lying, attention-seeking, money-grabbing, and mentally delusional. She had Munchausen’s; she wasn’t ill.
I was horrified. Never before had I been so invested in a celebrity being ‘cancelled’.
Sure, I could admit that Jameela looked amazing at her last red carpet. But how could her accusers know how many layers of makeup disguised her dark circles? Or how many days in bed she would need to recover?
I shouted into the void. How lucky, how privileged, and how disconnected from chronic illness must you be, to believe that anyone would choose this? And how ironic was the idea that people with chronic illnesses fake being ill, when all we ever do is fake being well!
Watching the world turn on Jameela hurt deep in my gut. Because since my teens I’d been terrified that those same accusations might one day be turned toward me.
Last summer’s heat wave triggered another flare of my PoTS. I was collapsing constantly; I couldn’t stand for long enough to brush my teeth. My doctors told me that slow, graded cardio might help, but my inpatient cardiac rehabilitation programme was postponed indefinitely because the NHS cardiac wards were now full of Covid patients. I was desperate, so with nowhere else to go I turned to the /r/PoTS Subreddit, hoping for advice and to learn how to differentiate symptoms from medication side effects. It wasn’t long until the Reddit algorithm suggested another group for me: this one called ‘illness-fakers’. Thousands-strong, and overflowing with vitriol, its members pounced on young women who shared their experiences of chronic illness online. Women with the same illnesses as me. Sitting in front of a fan on my bedroom floor, I felt my body flood with shame.
So I was upset, rather than surprised, when this month the BBC released Sickness & Lies, a new documentary about the supposedly booming community of ‘illness-fakers’. According to the documentary, exploding numbers of young women are feigning illness on the internet to gain followers, attention, and even money. Armed with an eerie soundtrack, the film takes a sensationalist sweep at an apparently pressing issue: that there may or may not be a handful of people, among the billions of people who use the internet, who are not 100% authentic online (in a social media culture that is, by its very nature, an elaborate performance). Also: there is a vicious Subreddit of trolls in a basement somewhere who deserve our national attention.
Of course, the filmmakers claim impartiality; that they’ve shown both sides of the argument. But how can you give two such groups an equal platform? Even just the accompanying BBC articles and Twitter posts plant the thought in our consciousness that you have to keep a watchful eye out for those deceitful disabled people. Following complaints to Ofcom, an outcry from the disabled community and a petition well on its way to 5,000 signatures, the BBC sheepishly changed one such article’s title from ‘Chronic illness influencers accused of faking it’ to ‘Munchausen by Internet: Are chronic illness influencers really faking it?’. Essentially, they added a question mark. Cute! But a change in punctuation does little to alleviate the film’s lasting harm.
Unfortunately, distrust of disabled bodies is nothing new. For centuries, it showed up as misogyny: hysteria was a handy diagnosis for women who displayed any set of symptoms not fully understood by the men in medical science. More recently, in the late noughties and 2010s, this distrust shape-shifted into an attack on those who relied on the welfare state: tabloid headlines blamed ‘benefits scroungers’ and the ‘work-shy’ for the 2008 global economic crash. So yesterday’s ‘benefits-scroungers’ are today’s ‘illness fakers’.Disabled people are still the scapegoat; only the label has changed.
Inevitably, the media rhetoric shifts the wider culture: in this case, into a climate of suspicion and twitching curtains. Disabled people are already forced to live their lives in front of a jury: from long, probing journeys to diagnosis, to the humiliating process of applying for PIP or a Blue Badge, and even to feeling the up-down eyes of fellow passengers when wearing Transport for London’s badge that reads ‘Please offer me a seat’. So it feels especially irresponsible that Sickness & Lies incites this same suspicion on social media, when the online space has remained, until now, mostly safe.
Certainly I found this true in the production of ill, actually (2019),my short documentary about three young people with chronic illnesses and how they express their identities online. In the three years we spent developing the film, we spoke on the phone or in person to over a hundred young disabled people. For the vast majority, social media was a lifeline.
The film opens with a striking image of personal trainer and Instagram star Ben Mudge staring into the camera: he is dressed up as Thor and he holds a nebuliser in his mouth. He is defiant; majestic; a beacon of hope to kids with cystic fibrosis. But every day he’ll get a comment doubting his diagnosis: ‘Do you actually have cystic fibrosis?’. He acknowledges that his looks and lifestyle make the disability narrative palatable in a way that ‘makes people feel better’. And yet at the same time, he’s told ‘There’s nothing actually wrong with you’. He’s damned if he does and damned if he doesn’t. Nevertheless, he keeps posting, propelled by the belief that ‘This is way greater than me’.
Our second contributor, ‘Bella’, is a cam girl. She is resolute and proud in her disabled identity (‘You can be a person with an illness and still be hot as f*ck’) and yet when it comes to sharing her illness ‘openly’ online, she finds it ‘incredibly difficult’. We can hardly blame her.
But it may be our third contributor, Jameisha Prescod of You Look Okay To Me, who is right on the money: ‘People don’t like hearing about sad stuff. The idea that you might have something that means you could die or get very, very sick, makes them start thinking about […] their own mortality. Like, anyone can get ill at any time’.
I suspect this is why disabled people are accused of ‘faking it’: because it’s easier. Accusing others of fakery absolves us of any responsibility. Our attitudes don’t need to change! Society doesn’t need to do a 180°! Disabled people just need to pipe down and stop exaggerating. It’s easier to imagine that a subsection of society fakes illness, than to deal with the reality: that one in five of us is disabled. That good people get sick, for no rhyme or reason? That’s a harder story to stomach.
More than anything, Sickness & Lies is a distraction. Because in telling one story, we inevitably leave out another. Our license fees can only stretch to make so much TV. So in commissioning a documentary about illness fakers, the BBC chooses not to commission another — about, I don’t know, some of the real concerns that disabled people face. Like how 60% of Covid deaths were disabled; like the psychological toll of 18 months of shielding; or like the recent increase in disability hate crime.
Misrepresentation matters. Especially given that disabled people are already grossly under–represented in the media; according to a 2021 report, disabled people make up just 5.8% of characters on screen. Therefore it is crucial that the disabled stories we do tell are authentic, helpful, and three-dimensional. Because we don’t easily forget the only disabled character we have ever seen.
I certainly haven’t. It has been almost two decades since Little Britain aired, but still I have not been able to forget that Andy Pipkin, one of the show’s central characters, was the punchline to every joke. As soon as his carer’s back was turned, he would jump out of his wheelchair and run off. Cue canned laughter.
Eighteen years on and I spent a whole year preferring not to leave the house at all than to be seen out in a wheelchair. Because, what would the neighbours think? What if they saw me get up out of the wheelchair and do my daily five minute walk? Would they laugh, like at Andy? My thinking might sound flawed, but it was as rational as the culture we’d created.
Thankfully, I eventually came to my senses and found a second-hand power chair on eBay. My friends’ first question was ‘What’s it called?’, but I was reluctant to give it a name, as if to do so would assert its presence as permanent. And yet it’s allowed me to see the sunset and the changing seasons, to go to the shops and go on dates. I haven’t yet given it a name, but I plan to; I know now that what we call things matters. Racism, sexism, homophobia, and transphobia are far from done and dusted — but as words, at least they are understood.
So let’s call it what it is: ableism. In the game of pointing fingers, I’m happy to give that thing a name.
Celestine’s short film, “ill, actually,” is available to watch now for free on BFI Player.