I Have A Chronic Illness But Online I’m Accused Of Faking It

Photographed by Laura Chen.
In the age of information, misinformation and all the grey areas that lie in between, what chronic illness looks like is being shaped before our very eyes. Especially on TikTok where, staggeringly, #chronicillness has accumulated 4.9 billion views. 
For some people with hard-to-diagnose conditions like fibromyalgia, polycystic ovary syndrome (PCOS) and chronic fatigue syndrome (CFS), or some forms of mental illness, being seen and heard is difficult. Though these are different conditions, they are diagnosed in the same way: by cross-examining a multitude of symptoms. These might include bowel problems, absence of periods, excessive bleeding during menstruation and intercourse, joint inflammation, dislocations and more. Often, these chronic conditions can present as other illnesses and overlap with one another. As a result they can be missed and go untreated for years. Endometriosis, for example, can take upwards of eight years to diagnose, for these very reasons. 
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To make matters worse, thanks to the unshakeable legacy of hysteria, being believed by medics and the general population alike hasn’t become easier with time. Historically, hysteria was a diagnosis aimed pointedly at women, which placed the womb at the centre of all our mental and physical health woes. This, of course, is now disproven nonsense. But it’s where the term 'hysterical' comes from and it has haunted medical biases against women for centuries. This disproportionately affects marginalised people, specifically LGBTQIA+ women, Black women and women of colour, both on and offline. 
Those brave enough to share their struggles with chronic illness are being targeted by individuals and groups online who hunt out, investigate and document the lives of sick people in the hope of an 'Aha! Gotcha!' moment, where the chronically ill person is found to be faking. You need to take only one look at these posts on the subreddit r/illnessfakers to see how pervasive and harmful the disbelief discourse can be.
This particular thread is dedicated to discrediting a select group of 'chronic illness influencers'. They snark and humiliate in the name of 'outing the truth'. Meanwhile behind the images they share and shame, very real people – likely with very real, chronic ill health – exist.
The 117,000 members of this group believe that the people they post about are affected by Munchausen by internet (MBI), a relatively new form of Munchausen syndrome, a psychological disorder that affects less than 0.1% of the general population. 
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But what is Munchausen? Sufferers of this serious psychological disorder self-harm, pretend to hear voices and actively try to become unwell in order to gain attention. This can be aimed towards themselves or others (the latter being known as Munchausen by proxy). There have been highly publicised cases, like that of nurse Beverly Allitt, who was dubbed the 'Angel of Death' after being found guilty of murdering and causing grievous bodily harm to several children. There have also been cases of parents making their children unwell, only to swoop in at the last minute to care for them and be praised for their acts of sacrifice and heroism. You can watch dramatisations of stories like these on platforms like Netflix
Accusing someone of having Munchausen also has a sinister undercurrent, given the true-crime yassification of these kinds of stories featuring 'crazy women'. The 'mad, bad and sad' archetype is the subject of many bingeable documentary series, where viewers are encouraged to fawn over and fear mentally ill women who commit atrocities, or women whose mental illness is caused by atrocities and who go on to commit crimes. Though these stories are thrilling – entertaining, even – they add to existing bias surrounding women and manipulation: the scorned woman, the dragon lady, the crazy ex-girlfriend. All of which can be weaponised to make blanket assertions that, perhaps, you are capable of harming yourself or others. Maybe you are mad enough to murder for attention.

There was one particular person who said: 'Ehlers-Danlos syndrome doesn't even exist, it's just a label they stick on people who can't decide what kind of hypochondria they've got.'

Jessi
It’s important to note that if you are suffering from Munchausen syndrome in any of its forms, you are as deserving of help and support as anyone else. You are certainly not deserving of humiliation in online or offline spaces. Munchausen syndrome is a psychological disorder that requires a lifetime of therapy and support if it is to be managed. Not unlike a chronic health condition. 
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The problem is that this mental illness is incredibly hard to diagnose and dangerous to attribute to someone experiencing chronic ill health. It labels the person who could be suffering with a chronic health condition as someone who is fudging the system – a tiresome trope that is often attributed to women in this space. Not only is brandishing a Munchausen diagnosis without the training or expertise to make that diagnosis dangerous but it flattens the experience of chronic ill health as a whole. It risks labelling sufferers of both chronic ill health and Munchausen as 'fakers' or 'hypochondriacs' and abandoning them, leaving them untreated and uncared for.
This all adds to an existing feedback loop where the outcome is always the same. Women who are in pain stay in pain because it’s unthinkable that they could actually be experiencing what they are telling us. The narrative that they are lying is easier to reconcile. 
You may have seen this 2016 episode of the Real Housewives of Beverly Hills, in which Lisa Rinna claims that co-star Yolanda Hadid, who’d contracted Lyme disease and had been experiencing worsening health as a result, is suffering from Munchausen syndrome. 
The 'is she faking it?' speculation ended in an explosive confrontation between the two cast members, when the damage of Lisa’s words was laid bare. It is a stark reminder that it has always been considered easier to accuse women in pain of attention-seeking than to believe them.
Women’s pain and disbelief go hand in hand. This is something that Jessi knows all too well. She was diagnosed with chronic fatigue syndrome (CFS) at 14, then with Ehlers-Danlos syndrome (EDS) and endometriosis at 27. 
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"Getting diagnosed, a part of me thought, Maybe people will take this a bit more seriously," explains Jessi. That wasn’t the case.
"I posted something on Instagram [after dislocating numerous joints at once] and hashtagged it #EDSlife, #ehlersdanlossyndrome, trying to make light of it. And I just got this torrent of: 'Well, were you doing something stupid?' 'This must have been your own fault.' 'Why are you wasting the NHS's time?' 'Just because you're a bit bendy, you can't be that bad.' There was one particular person who said: 'EDS doesn't even exist, it's just a label they stick on people who can't decide what kind of hypochondria they've got.'"
It’s not just broad social media hashtags that can incite dismissive commentary. Local support groups dish out the same snotty attitudes.
"My diagnostic surgery for endometriosis was done by an emergency surgical team, who also removed my appendix," Meg tells me. 
"I tried to access some Norwich-specific support groups but because my diagnosis was from a surgical team – and not a gynaecology team – it was very much considered by the group that I may not actually have endo, which I’ve had a diagnosis of since I was 15. It just makes you feel like shit."
Hannah, who suffers from a number of chronic health conditions, tells me that she’s put off by chronic illness communities and has found more meaningful support on a one-to-one basis.
"It’s changed the way I talk about illness online, at least in part," she explains. "I know these forums exist and it can [feel] like you aren’t sick enough to be there when, in fact, I am very sick."
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It begs the question, with so many people seeking succour from these online spaces, why have scathing comparisons and 'pain Olympics' taken precedence over meaningful support? Why is it easier to believe in faking it than it is to believe in pain? 
Health psychologist, CBT and EMDR therapist Dr Sula Windgassen tells R29: "It's interesting that within groups, you'll always see factions. You see it within the LGBTQIA+ communities: you would assume everybody has or could have experienced ostracising from the heteronormative population and so they'd be united, but in fact you see factions forming within that. It's the same within the chronic illness community. The experience of being ostracised is a really threatening one. And so because many people with chronic illnesses are likely to have experienced some kind of dismissal, disbelief, ostracisation, isolation, they want to establish legitimacy of their own health condition. And one of the ways you might do that is compare your condition with another, to demonstrate: look, this is 'real'."
As for gatekeeping, Sula explains: "It begins with scarcity of support, because we know that so many people, especially post-COVID, find it difficult to see healthcare professionals. Another [reason] is the lack of control people have." She continues: "We look for control in various different ways. It's not a conscious process, people don't think, I don't have control over my health so I'm going to have control over this support group, say who can enter it and who can't, and that's going to make up for it. And lastly there’s implicit biases – we can see it within our healthcare professionals that are trained and receive ongoing training and seminars and workshops but that unconscious bias still remains. It stands to reason that patient groups and the general population, who aren't receiving such training, are going to hold their own implicit biases as well."
Jessi thinks that people just need to understand that other people's illness is not up for debate. "If it doesn't affect them," she says, "and it doesn't in any way have any negative impact on their life, leave it well enough alone."

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