The BBC’s ‘Sickness and Lies’ adds to the stigma disabled and chronically ill people experience

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Alice Howarthhttps://dralice.blog/
Dr Alice Howarth is a research academic working in pharmacology and therapeutics at the University of Liverpool. She is vice president of the Merseyside Skeptics Society, has written for The Guardian, Breast Cancer Now and is co-host of the skeptical podcast Skeptics with a K. In August 2020 Alice took on the role of deputy editor for The Skeptic.

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At the beginning of August – just a few days after Disability Pride Month came to a close – The BBC broadcast a new documentary, called Sickness and Lies. Accompanying the documentary was an article headlined “Munchausen by Internet: Are chronic illness influencers really faking it” which said:

as visibility has grown, so have accusations of fakery. A new BBC documentary, Sickness & Lies, explores whether the accusers are right. Are some influencers faking illnesses for fame, money and attention?

Naturally, there was quite the backlash from the disabled community on social media. The idea that people with serious chronic illnesses might be faking it for some benefit to themselves is one that is repeated over and over again despite no evidence that fraud is common in disabled or chronically ill people. Perpetuating this accusation of fakery has the potential to be quite damaging, which is why I watched the documentary, to get a feel for just what evidence the BBC had to present.

Sickness and Lies

Before even watching the documentary, as someone who is disabled and suffers from chronic illness, I had some concerns about the title. It’s certainly emotive and eye catching. Maybe if the documentary was particularly well balanced it might help educate people on the experiences shared by many disabled and chronically ill people. Content about the possibility of people taking advantage of the welfare system, for example, has been popular over the years. Maybe using an attention-grabbing title could help encourage people to watch and learn something? But in using such an emotive title, it risks perpetuating the stereotype that people with chronic illnesses are lying about their symptoms and the influence those symptoms have on their daily life.

Doctors routinely assume that disabled or chronically ill patients are exaggerating their symptoms, that they’re misinterpreting their symptoms, or that the physical symptoms they describe manifest due to mental ill health. If a doctor cannot find an obvious cause of real physical symptoms, instead of investigating further, patients are often dismissed as if they are “creating” their symptoms. This is amplified in marginalised groups, with women often treated as if their pain is less serious, and black people treated as if their pain threshold is significantly higher. And, of course, countless people are told they’d feel better if they just lost some weight.

It is within this context – not to mention a workplace culture in which people fake illness or take sick days in order to get access to welfare support – that this title sits. Placing the word “lies” next to the word “sickness” plays heavily into discrimination that disabled and chronically ill people already face, and at best it is insensitive.

Chronic illness influencer

The documentary opens with the line:

a new kind of influencer has been born – the chronic illness influencer, and some are attracting huge followings

Notably, the documentary does not go on to define what it means by “chronic illness influencer” nor does it provide evidence that they exist – only that there are people with large social media profiles who discuss their chronic illness.

Influencer - a cartoon drawing of a white woman wearing red sunglasses, a red dress and red earrings and hairband holding back her dark hair. In the background are social media icons and emoki.

There are no concrete definitions of what constitutes a social media influencer, but broadly speaking it is a marketing term for someone who has enough of an influence within their niche to be able to sell or promote products to people within that niche.

There are doubtlessly some people who have a niche within the world of chronic illness and disability advocacy or visibility, and who are profiting from having ‘influence’ within that niche. Perhaps that’s sufficient to say that chronic illness influencers exist, but personally I think it’s less clear cut than that. Many of the people with platforms who discuss chronic illness that I encounter predominantly focus on advocacy or visibility; they are doing what they can to support people within their niche or to share their own experiences. Perhaps, alongside that, they are able to use their ‘influence’ to sell products that might be used by people in their niche and make themselves a little money – but that feels quite different to someone whose primary aim is to influence their audience for profit.

There are also plenty of people who are social media influencers who just happen to have chronic illnesses, and who share their chronic illnesses on their public platforms. We could, perhaps, describe them as social media influencers and chronic illness advocates.

If I were being really cynical, I would say setting up the idea of a chronic illness influencer might well make it easier to accuse people of faking – because we might convince ourselves that these influencers are rich and famous and therefore in some way ‘fair game’.

Fakers

The documentary pitches two examples of people who are proven ‘fakers’. The first is Belle Gibson. Belle Gibson is a heartbreaking example of a woman who has admitted to faking the cancer she told her vast number of followers she had. She claimed she was managing her fictional cancer with alternative therapies that she wrote about on her blog, social media, in her books and in her app. I wouldn’t call Belle Gibson a ‘chronic illness influencer’ – if anything, I would describe her as a ‘wellness influencer’. She developed an entire business around promoting and selling wellness advice and alternative lifestyle views. Her fictional illness was a big part of her appeal and marketing strategy, but it was not her primary niche. I don’t think Belle Gibson is the right example for a documentary about accusations of faking within the chronic illness community, but she is unquestionably an example of the potential damage of someone faking something serious in order to generate sales or influence.

The second example of a ‘faker’ given in the documentary is of an unnamed woman, whose story was told through her sister (which I’m not sure is ethically appropriate but at least the woman wasn’t identifiable). The woman had factitious disorder, also known as Munchausen’s syndrome, which is a psychological condition where someone feigns illness for the purpose of gaining medical examination or treatment, or else sympathy or comfort from the healthcare system. Importantly if someone is faking an illness for material gain – money, time off work or access to drugs for example, then it is not factitious disorder. The sister describes examples of how the woman feigned symptoms and consequences of illness in order to seek medical care. It’s undoubtably a very sad case, but again, it does not really pertain to the online chronic community and accusations of faking. The documentary doesn’t say that this woman was even active on social media, let alone whether she had a wide following or any ‘influence’ in the chronic illness niche.

Accusations

The documentary goes on to present reddit forums that are dedicated to scouring the social media accounts of people who talk about their chronic illnesses online looking for evidence of faking. The level of scrutiny that takes place on these forums is so intense that it can cause serious harm to the people who are targeted. These forums often refer to the people they target as “munchies”, claiming that instead of having the illnesses they claim to have, their targets are actually suffering from “Munchausen by internet”.  The documentary introduces this condition as a sort of modern manifestation of factitious disorder, and even speak to the psychologist who coined the name.

While the documentary does talk about some of the dark side of these forums and the potential damage that they cause to people with chronic illness or disability, they also imply that there is a need for a space where people can challenge someone who says they are chronically ill or disabled.

The host asks the question “how can you tell if someone has Munchausen by internet and isn’t just genuinely sick?”. For me this is the crux of the issues with this entire documentary. While the documentary gives an example of Belle Gibson, someone who had the potential to cause great harm by faking a serious illness she didn’t have and using it to gain influence and financial gain, it predominantly focuses on people who fake their illnesses for other reasons. The documentary doesn’t fully explore what these reasons might be – a vague comment on “fame, money and attention” – nor does it provide any evidence that this is a cause for concern within the chronic illness community. It pitches the idea of “Munchausen by internet” and then suggests that a person who had this condition wouldn’t be “genuinely sick”. To be crystal clear – factitious disorder is a genuine, serious psychological condition. People with factitious disorder are “genuinely sick”.

[Sickness and Lies] pitches the idea of “Munchausen by internet” and then suggests that a person who had this condition wouldn’t be “genuinely sick”. To be crystal clear – factitious disorder is a genuine, serious psychological condition. People with factitious disorder are “genuinely sick”.

This sets up a false equivalence: just because we should be able to challenge the Belle Gibson’s of the world, does not mean scouring the social media of people with chronic illnesses for evidence of “faking” is ethical. 

Wrongly accused

The documentary speaks to someone they describe as a chronic illness influencer who they call Jess. Jess talks about how she has been the target of accusations of faking and says that she has been doxxed. She talks about how her chronic illness affects her life and how she found comfort in sharing her experiences in the chronic illness community online. She also expresses concern at how people might list their diagnoses and all their fluctuations, as if to prove how sick they are.

The way this is framed in the documentary (not by Jess), is that in some cases these people might be ‘faking’. In reality, many people with chronic illnesses feel like they have to justify themselves.

A white woman with a short blonde hairstyle travels down a pavement using her electric wheelchair.

Many of us have experiences of people saying “but you don’t look sick”, or “you’re just lazy” or “you seemed fine yesterday”. Many of us feel guilty if we have to let someone down who wants us to do something for them and we can’t, or we have to cancel plans at the last minute. This is so pervasive that many people feel the need to prove themselves. This can lead to changes in behaviour which might include vocalising symptoms you may not otherwise express. This can easily come across as an exaggeration even to the person expressing them, because we often get so used to carrying on despite our symptoms that saying them out loud feels like an exaggeration. It can also be assumed to be ‘over sharing’ by non-disabled people who find these topics uncomfortable. These concepts aren’t fully explored in the documentary.

Instead, they talk to another person who has been accused who says they posted their medical diagnoses purely to prove to their accusers that they were really sick. No one should have to share their private medical records to strangers to prove that they are unwell.

Ultimately though – there is no way of differentiating between the “rightly” or “wrongly” accused. The documentary doesn’t pay enough attention to how harmful these armchair diagnoses from anonymous non-experts could potentially be to the people accused of faking their conditions.

Conclusion

There’s a lot to be concerned about with Sickness and Lies, and a lot more that I haven’t even touched on. I think the documentary does have some valid things to say about disability, and the forums that accuse disabled people of faking, but they don’t expand on those topics adequately. Instead, the documentary tries to create ‘balance’ that it doesn’t provide adequate evidence for. It doesn’t provide adequate proof that chronic illness influencers are a thing, or that there is a specific problem with chronic illness influencers faking their conditions for fame, money or attention. The examples offered by the documentary aren’t appropriate illustrations of its central thesis. It doesn’t focus enough on the harm of illness faker subreddits, particularly those unregulated ones, nor does it spend any time on the important fact that most of the people accused of faking their illnesses are women – and, often women, who can’t work in conventional ways in order to support themselves.

By suggesting that there are people who fake their illnesses, the programme risks driving people to those subreddits where they might be exposed to more harmful, radical and toxic accusations of faking, and contributes to a problem where people with disabilities – particularly people with disabilities who are marginalised in other ways – are disbelieved and not treated with compassion.

Sickness and Lies conflates ‘faking illness’ with having a different illness to the one a person was diagnosed with, without any focus on the issues of misdiagnosis for people with chronic illness. Maybe people with chronic illnesses appear inconsistent in their symptoms because the illness they were diagnosed as having is not what they actually have. Maybe they have multiple conditions, and they choose not to share all of them or haven’t had all of them diagnosed. Maybe they are left without medical support for so long that they self-diagnose. And maybe, just maybe, some people really are faking it; and maybe they are faking because they have a serious, recognised psychological condition. If that is the case – don’t they also deserve compassion? Rather than vitriolic accusations, doxxing and threats.

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