We’re not faking our illnesses or disabilities: An OpEd in response to “Munchausen by Internet”

Person with hand over mouth, palm out.

By Marie Dagenais-Lewis, Diversability

The disability and chronic illness community was rocked to its core when journalistic integrity was thrown out the window as the BBC published its headline “Munchausen by Internet: Are chronic illness influencers really faking it?”. 

This report was based off a documentary that supposedly dived into the heinous culture on forums that question the validity of disabled/chronically ill influencers’ diagnoses. According to a disability social media influencer who was interviewed for the The BBC piece, sources were misled  as production decided to take a different angle for their news report, questioning if some chronic illness influencers were faking for fame…impacted by something called “Munchausen by Internet”. 

Dr. Marc Feldman describes Munchausen by Internet to be faking illnesses online for “attention and sympathy”. As the age of digital advocacy has only just begun, I cannot begin to describe how harmful this narrative is to the disabled community. 

The disabled have to live with enough stigmatization thanks to the systemic ableism ingrained into society—the last thing we need is click-baiting headlines to perpetuate ideas that we are untruthful or attention-seeking. Only 41% of Americans engaged with in-depth news coverage beyond headlines, which means the majority of Americans will scroll past this toxic BBC headline with the takeaway that someone who is vocal about being sick on social media is faking their illness. Having one of the world’s major news sources publish a headline that gives society permission to question the validity of one’s diagnosis because they share it on social media is another example of the ableist society trying to minimize the work of disabled advocates. 

Person with orange prosthetic leg sitting cross-legged on brown couch— black cell phone in hand.

Finding solace in social media

Social media has given the disabled and chronically ill a way to connect and interact with the world like never before. Many of us with chronic, rare, and invisible diagnoses find solace in social media. Social networks and online support groups help us find and create spaces of support through shared experiences. For the first time in many people’s lives, social media gives a voice and a platform— paving the way for a new type of advocate in this digital age. Furthermore, increasing amounts of disabled and chronically ill advocates are using social media to create a career and brand of advocating for the dismantlement of the Ableist Society. These advocates are vital to the Disability Rights Movement—we are not posting for attention and sympathy, we are posting for awareness and justice. 

As someone who was born disabled with a rare disorder, posting about my experiences on social media has given me validation I couldn’t find anywhere else. Social media continues to give me an easy outlet to discuss the medical gaslighting and discrimination I have been faced with. I  cling to using social media advocacy as a way to cope with it all. Once I started sharing my story, I was connected to other people who either lived with my same disorder or lived through similar experiences and I was able to understand myself on a deeper level. I learned about disabled culture, which led to my self-love journey towards acceptance for who I am as a disabled soul.  Social media was there for me when I lost my career to the Ableist Society, allowing me to rise and create my own future as an entrepreneur and advocate.

Challenge Ableism

It hurts to imagine how much closer our society would be to dismantling ableism if people would use the time they would spend trying to prove someone was faking a diagnosis to instead understand the dynamics of disability.

The idea that we can tell if someone is faking their diagnosis stems from the ableist notion that disability has a certain look. It’s very important to remember that disability can be invisible. unpredictable, and varies between individuals. It is human nature to have that fleeting thought that someone may be faking, but we have to start challenging those ideas. We must remind ourselves that we don’t get to decide what someone experiences—that is for them to tell us, and they have every right to use their social media to do so.

About the Author:

Marie Dagenais-Lewis is an anti-ableist thought leader who created @r.a.r.e.advoc8 and the Chronically Spooky Series. As a member of the Diversability team, she works to ensure the disabled experience is celebrated through community with the Diversability Leadership Collective.