Empowerment vs deceit: the darker side of digital health communities

Chloe Kent 13 February 2020 (Last Updated February 4th, 2020 16:25)

Chronic illness support communities crop up all over social media and provide a way for people all over the world to connect and support each other in managing their conditions. However, the internet being as it is, these communities are uniquely vulnerable to malicious infiltration and misinformation. Chloe Kent takes a closer look.

Empowerment vs deceit: the darker side of digital health communities
Online peer support groups for chronically ill people can become familial communities for individuals living in daily pain. Credit: Shutterstock

On a snowy day in December 2010, Elliott Rodgers was on the way to meet his local mayor to discuss an initiative to help vulnerable residents in the harsh weather. Before he could get there, he fell on black ice and twisted his left ankle inwards 90°, badly breaking the media malleolus bone inside and tearing every ligament and tendon on the way.

The ramifications of the injury have affected him every day since. A course of steroid injections in 2015 worsened his condition considerably, causing a neuroma and neuralgia. Today, Rodgers has to take very strong painkillers and must use a cane to walk, although he still has a limp and can only cover short distances on foot.

He is now looking at having his left leg amputated in a last-ditch attempt to relieve the pain he’s lived with for almost a decade.

When his therapist recommended that he found a way to connect with people who had already had amputations, he turned to Facebook, and is now part of a support group called UK Amputees.

Groups like these crop up all over the internet, providing people with chronic illnesses and disabilities a space in which they can share their stories, provide each other with emotional support and swap tips for symptom management. Social media has always fostered connections between people who would otherwise never meet, but for people with chronic illnesses it can serve an especially vital function.

Rodgers says: “UK Amputees gives me a space to ask questions and get answers from people who have gone through the process. They are living with issues I will face when my amputation is done.”

As well as empowering patients to become more educated about their illnesses, it can help them feel less isolated while living with a lifelong condition.

Hayley Jordan, who lives with two autoimmune conditions – ankylosing spondylitis and primary sclerosing cholangitis (PSC) – says: “It’s refreshing to hear stories from people who truly know what it’s like. Friends and family can support me but it’s hard to for them to actually understand the burden, especially if I’m asymptomatic at any one time.”

But alongside providing a safe space for chronically ill people to share their lived experiences with an empathic community, these digital spaces have their caveats. People can be duplicitous about their identities and misinformation can run rife. These are factors which come with the very territory of being online, but when people’s health is stake it can be especially devastating and potentially dangerous.

Münchausen by internet

University of Alabama professor of psychiatry Dr Marc Feldman is an international expert in Münchausen syndrome, a disorder in which a person deliberately acts as if they have an illness when they are not really sick, lying about symptoms and tampering with test results. People with the condition can go so far as deliberately inducing the symptoms of illness within themselves, motivated by the sympathy and attention they obtain from being unwell.

In 2000, Feldman coined the term ‘Münchausen by internet’, to describe people who feign illnesses online in support groups like the ones Rodgers and Jordan are part of. When deceptions like this are discovered the results can be traumatic.

In 2001, a well-known blogger by the name of Kaycee Nicole Swenson who presented herself on numerous websites as a teenager suffering from terminal leukaemia was found to be the persona of a middle-aged American woman named Debbie. An 18-year-old going by the name of ‘Limeybean’ feigned a battle with tuberculosis on LiveJournal in the mid-00’s, eventually succumbing to the disease and sending a community into mourning before it was all revealed to have been a rouse. Perhaps the most high-profile recent case is of Australian health blogger Belle Gibson, who was profiled in Cosmopolitan and Elle before being revealed to have feigned her numerous cancer diagnoses in 2015.

“Overall, Münchausen by internet is unusual,” says Feldman. “But I think it’s more common than we had previously recognised. I’ve known of digital support groups that have ended as a result of the anger generated due to people lying online. On a personal level, it can be utterly devastating to realise that this person you’ve expended a lot of time and attention on, and maybe even come to really care about, has been lying to you all along.”

A number of tell-tale signs can alert members of chronic illness groups to fraudulent actors. These include inconsistencies in the information a person presents, their medical crises alternating with miraculous recoveries and increased activity in the group if other members seem to be getting more attention. Many people feigning their illness adopt multiple personas – a patient, plus their parents, friends and even doctors – but are found out when all of their characters exhibit the same grammatical idiosyncrasies.

Dramatic and shocking by their very nature, each case of Münchausen by internet which is revealed to the world gains far more notoriety than each patient who finds their online support group to be a lifeline. But when people go online and string along genuinely ill people as part of their deception, it’s hard not to sit up and take notice.

Feldman says: “Some of the victims look back and realise they became way too devoted to the poser and had spent way too much time online. If there’s anything constructive about it, many of them learned to be more circumspect and limit their time online so it doesn’t come to dominate their lives.”

A perception of deception

It’s not just misinformation around the identities of individuals which can spread through online chronic illness communities, but misinformation about the very conditions themselves.

One of the most controversial diagnoses in current medicine, and thus an illness with some of the most controversial online support communities, is chronic Lyme disease. Lyme disease is a bacterial infection of Borrelia burgdorferi spread by infected ticks, typically cleared by a course of antibiotics. Thousands of patients claim they live with a long-term form of the illness, but the medical institution isn’t always supportive.

Where some clinicians dispute the diagnosis of chronic Lyme, others maintain the disease is not only real but more common than anybody could have first expected. While the debate rages on, patients experiencing these symptoms are often shuttled from doctor to doctor before landing on the chronic Lyme label. Alternatively, they turn to ‘Dr Google’.

London’s Lyme Disease Clinic founder and medical director Dr Joshua Berkowitz says: “Many chronic Lyme patients have been to see a variety of doctors and nobody’s come up with a diagnosis. They start to self-help, they read lots. They sometimes grasp on to things which are not necessarily important then make them important, and then they talk to each other and feed each other and inform each other in these groups.

“It’s not possible for a site to be so clean and so well-informed that it’ll never have any misinformation, and there’ll be a certain amount of hysteria that creeps in.”

Chronic Lyme patients can wind up undergoing a variety of treatments: ozone therapy, a procedure in which blood is drawn and then reinjected into the body after being mixed with ozone. Months or years of recurrent antibiotic treatment, which can cause chronic diarrhoea. In many cases these drugs can be supplied intravenously, and patients being treated for chronic Lyme have died from infected catheters.

None of these potentially dangerous treatments have been established as useful in long-term clinical studies, but through chronic Lyme forums enthusiasm for them can spread.

In a blog post entitled Lyme Warrior No More, Abby Hartman, who describes herself on Twitter as an ‘ex-chronic Lyme cult member’ writes: “These Lyme groups are echo-chambers for pseudoscience. They convince followers that they must see self-appointed and often secret ‘Lyme-literate doctors’ (LLMDs) who will treat them for chronic infection. These groups empower their marginalised members with validation, support, and the ability to even treat themselves by comparing notes when there is no access to a LLMD.”

Still, it’s a well-established fact that placebos can provide patients with relief from the most debilitating symptoms. Many chronic illness patients will not die or be seriously harmed by the unconventional interventions they unearth in Facebook groups but still find a measurable benefit in them. The biggest harms of therapies like acupuncture, diet, or supplements are lost time and money.

Speaking of her own autoimmune condition, Jordan says: “There is no real treatment or cure for PSC right now, although many studies are being conducted to find one. That can be a difficult pill to swallow for some people and they find it eases their mind to do a liver cleanse or drink apple cider vinegar each day. I certainly don’t begrudge them. This illness is difficult enough without being judged for your personal health choices.”

Communication with the world

In her book Rethinking Pain, Dr Helena Miranda writes: “At its worst, an online group that rehashes negative emotions and experiences can maintain the pain symptoms of its members and strengthen the feeling of being ill. At its best, however, in many ways the group empowers and reinforces the individual’s own ways of coping with pain.”

It feels inevitable that individuals struggling with Münchausen may act out online as well as offline, that the misinformation, which spreads on social media like a virus will affect the sick and the healthy. But online peer support groups for chronically ill people can become familial communities for individuals living in daily pain. They contribute drastically to people’s mental and social wellbeing, and for that it is hard not to commend them despite the flies in the ointment.

Berkowitz says: “These are human beings, they’re ill, many of them feel isolated at home and this is their form of communication with the world. They’re bound to join these forums, and on a good day they’ll say one thing and on a bad day they’ll say something completely different. The internet has good and bad to it and patients take what they want from it.”