A BBC documentary called Sickness and Lies has received a huge backlash on social media. And the angry reaction from people affected by the film is entirely justified. Because the programme is little more than dangerous and trashy propaganda.
A new BBC documentary: Sickness and Lies
The BBC shared the new documentary on Twitter:
Are some chronic illness influencers faking it on social media for fame and money?
— BBC News (UK) (@BBCNews) August 5, 2021
Sickness and Lies is about chronically ill people who people are accusing of faking or exaggerating their conditions. But the documentary has caused anger on social media. And if you have experience of chronic illness, it’s easy to understand why.
I have lived experience and a vested interest in Sickness and Lies. My partner is chronically ill. She lives with 15 different illnesses and conditions. These include the genetic connective tissue disorder Ehlers-Danlos syndrome (EDS), myalgic encephalomyelitis (ME), and different types of seizures.
Journalist Octavia Woodward made and presented the documentary. As the show notes describe:
The chronically ill community has exploded in the last few years, with high-profile members like Lady Gaga, Selena Gomez and Lena Dunham. With 15m people in England alone living with a long-term condition, and numbers rising, it’s no surprise chronic illness influencers on social media are attracting huge followings.
But, as their profiles have grown, so have accusations of fakery. Can the accusers be right? Are some influencers faking illnesses for fame, money and attention?
Woodward delved into the world of chronic illness and accusations of fakery. But Sickness and Lies barely holds up to scrutiny.
For example, Woodward notes:
I’ve had some of the procedures that these influencers post about. And I understand everyone reacts differently. But some things just don’t add up. Influencers asking for multiple types of feeding tubes, at once, into stomachs that supposedly no longer work – and still eating normally.
With this was a picture of a social media post. It was quoting someone living with a chronic illness who posted a photo of a plate of food. The quote said:
She “can’t swallow” but chooses to order this
My partner lives with gastroparesis (where her stomach doesn’t empty). This would be an example of someone who can have a stomach that sometimes ‘no longer works’ but can also eat. She has been hospitalised on numerous occasions for uncontrolled vomiting. As I write this, she’s in the middle of a flare now. The vomiting will probably last for about 20 hours. She’ll take several days to recover, but the majority of the time she can eat. She also has dysphagia (difficulty swallowing). But again, this comes and goes – contrary to the social media screenshot Sickness and Lies showed.
The point being – people can have feeding tubes or not be able to swallow properly for periods of time and eat at others. Some of the influencers mentioned are likely to be in that situation.
The dark world of Reddit
Sickness and Lies goes on to discuss the Reddit group which sparked Woodward’s investigation. A quick scan of it shows it’s littered with people commenting on things they have little understanding of. For example, someone lifted a picture of an Insta post from someone talking about Lyme disease. The Reddit caption was:
“There is no cure for Lyme disease” Maybe try some antibiotics Ash? Oops never mind, your doctor refused to prescribe them bc you tested negative for Lyme with RELIABLE tests in the doctors office
The person talking about Lyme disease, whose Instagram post was then put on the Reddit group, is Ashley. She lives with multiple chronic illnesses, and she’s currently being tested for Lyme disease – which in this context would likely be so-called chronic Lyme disease. Contrary to the Reddit poster’s assertion, chronic Lyme cannot be treated with antibiotics. Testing for it is limited and unreliable. Yet the Reddit poster seems certain that Ashley is making this up.
Psychiatry or quackery?
a pattern of behavior in which a person seeks attention and sympathy by feigning illnesses in online venues such as forums and social media sites.
Sickness and Lies lists some of the warning signs of this condition. But a quick scan of them shows that some are chronically ill people’s day-to-day lives. Or, they are just Feldman speculating over things he doesn’t understand. For example:
- “Near-fatal bouts of illness alternate with miraculous recoveries”: that is chronic illness for many people
- “There are continual dramatic events in the person’s life, especially when other group members have become the focus of attention”: some people’s chronic illnesses fluctuate wildly in the space of a few hours.
- “There is feigned blitheness about crises that will predictably attract immediate attention”: if you live with a chronic illness, you’ll understand that quite often ironic cheerfulness over your body is part and parcel of living with it.
Just for balance
Seemingly for balance, Woodward goes on to claim she was struggling with the idea people could be faking illness. But she then finds a person who’s sister was pretending to have cancer. It’s the only concrete, evidenced example given in the programme. Moreover, Woodward then goes on to quote people who cast doubt over just how ill a chronic illness influencer who died in April 2019 was.
Sickness and Lies also speaks with one of the moderators of the Reddit group who is a “medical professional”. This person claims a friend at university pretended to have her illnesses. The point being, that’s what’s driven her to ‘out’ people she believes are faking their conditions. Woodward then speaks to a forensic psychology researcher who backs up some of the Reddit group’s claims.
At the end, Woodward does conclude that this “callout culture” is extreme. And she notes how it has affected some of the victim’s lives.
Unprovable. But we’ll run it, anyway.
Woodward concludes of the chronic illness influencers:
without access to their private medical records, there’s no way of knowing what’s really going on with them.
But the BBC and Woodward decided to make Sickness and Lies anyway – without being able to prove anything.
There’s a lot to unpack with the programme and Woodward’s reporting. But overall, it has pushed various, highly damaging ideas with no concern for the consequences for chronically ill people.
Not least of these issues is that, as one Twitter user said:
chronically ill people are literally dying because they can’t convince anyone, including medical professionals, that they’re ill, and you’re fine with posting irresponsible shit like this?
ME is a prime example. People living with it have for decades been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. Much of this comes from the now-discredited PACE trial. It was a study, part-funded by the UK government, into treatment for ME. It found that people could recover from the disease by having cognitive behavioural therapy (CBT). In other words, people living with a very-real, viral-based illness should just ‘think themselves better’. Essentially, the trial pushed the notion that the disease was part-psychosomatic or ‘made up’ by patients. But the trial’s findings haven’t held up, with its proponents accused by some of scientific fraud and causing potentially the “biggest medical scandal of the 21st century”.
Long Covid next in line
The psychologisation of physical illnesses has been happening for many years. That is, when a doctor can’t find a physical cause for a person’s illness, they claim their mental health is causing it; ‘psychosomatic‘ or, it is ‘all in their heads’. Generally this is nonsense. For example, my partner was sectioned under the UK Mental Health Act (committed to a mental institution) because doctor’s said she was making her illnesses up.
Psychologisation has gained traction, and it’s partly due to governments trying to deny people social security and also pushing psychiatry and antidepressants because they’re cheaper than finding out what’s physically wrong with someone. And as I previously wrote, people with long Covid may well be next in line to be subjected to this.
Medical misogyny is another factor in accusations of fakery. The majority of people Sickness and Lies featured were women. The insinuation that a woman is wrong/stupid, or is making her illnesses up, is all too common in the medical and scientific communities – and in society more broadly. For example, EDS disproportionately affects women. Yet it takes on average 19 years of symptoms before a medical professional diagnoses someone with EDS. In my partner’s case, it wasn’t until the age of 32. She’d been symptomatic from the age of around five.
The problems with the BBC as a public service broadcaster is another factor. As The Canary has documented, it repeatedly pushes government agendas over impartial, public interest broadcasting. In this instance, as one Twitter user summed up:
BBC News is perpetuating a toxic mythology in order to pave the way for denying benefits to people with #LongCOVID. That’s why they figured it’s an awesome time for a story about malingering for money. You don’t even have to connect the dots, they’re on top of one another.
There’s another important but uncomfortable point that has to be made.
Most chronically ill people I know would not have even considered making this programme. People’s furious responses in the Twitter thread show this. Yet disabled journalist Woodward chose to – and seems pleased with it. This sadly sums up a tiny, but generally unspoken problem within the disabled community. People with physically visible impairments (like Woodward, who lives with spinal muscular atrophy) sometimes don’t understand, or even dismiss, people living with chronic illnesses.
I’ve witnessed it first hand with my partner. She has experienced this from a minority of disabled people and disabled people’s organisations (DPOs). It’s like the conditions of chronically ill people are less valid than people with visible, physical impairments. The fact that Woodward had the idea to do this documentary, let alone make it, for me shows that. Would anyone question her diagnosis, given she is visibly, physically disabled? I very much doubt it. But for people living with invisible impairments, they’re clearly fair game.
Sickness and Lies is utterly toxic programming from the BBC. The size of the issue it claims to address is tiny. Therefore, it serves no other purpose than to compound the stigma and discrimination that exists around chronic illness. The programme is riddled with holes. Woodward should have known better than to even begin this project. But moreover, editors at the BBC should have immediately flagged it as unsuitable for broadcast. Yet they still released it anyway.
There are potentially millions of people who spend their lives trying to prove how ill they are. To have an entire programme perpetuate the stigma and hate that they’ve experienced is catastrophic. Not that anyone involved in its making seems concerned. But why would they be? It probably doesn’t affect them.
I now have to go and empty my partner’s sick bucket. Maybe Woodward and her team would like to come and watch her vomit for 20 hours – just in case she’s ‘faking it’.
Featured image via BBC iPlayer – screengrab
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