The Lies 'Sickness and Lies' Spreads About the Chronic Illness Community

BBC News released a 25-minute documentary on August 5, 2021 called “Sickness and Lies.” It is about the chronic illness community online, the accusations against these chronic illness advocates, and the effects of the subreddit “illnessfakers.” The subreddit “illnessfakers” uses the forum to attempt to disprove chronic illness advocates and others who speak about their illness online.

At first, the BBC documentary was presented in a different way to several of the chronic illness advocates who were involved. They were led to believe that the documentary would focus on how chronic illness advocates are being bullied and called fakers just for sharing their stories on the internet. However, while the documentary at a glance seems to have an unbiased point of view, it is very apparent after watching a couple of minutes that the documentary finds that there is more of a story in these supposed “illness faker influencers” than looking into the problematic subreddit group. Due to the harmful narrative and stereotypes the BBC documentary has promoted, it has caused much concern within the chronic illness community.

Internalized Ableism and Gatekeeping

First of all, chronic illness advocates who share their lives on the internet are not there to prove their disability to anyone. Many disabled advocates are posting about our most vulnerable moments, only to see their posts and lives dissected in forms like illnessfakers. What hurts the most is when it comes from within the disability community. There are some in the subreddit who are disabled themselves. So why are they accusing others in their community of faking? This can be due to internalized ableism and gatekeeping.

Internalized ableism within the disabled community can be very harmful. We see this within the illnessfakers subreddit when people with disabilities compare their disabilities and experiences to others. Remember, our illnesses will not look the same. We may have the same diagnosis, but my body and your body are very different. The person might have different co-morbidities, different genetics, age, sex, weight, etc. There are many reasons why someone might have different or more complicated symptoms. We also don’t know their whole story, only what they let us see.

When looking at the subreddit, it is noticeable that people with invisible disabilities are the ones who are primarily targeted and called fakers. Many who deal with chronic illnesses have a difficult time getting an accurate diagnosis. In fact, it can take someone with an invisible illness years to get diagnosed. For example, fibromyalgia can take 6.5 years, and rare diseases like Ehlers-Danlos syndrome can take 10 to 20 years.

As someone who has been in the healthcare system my whole life, in my experience, insurance will often deny referrals and make the process of seeing a specialist complicated because they don’t want to pay. Many doctors don’t want to deal with complicated patients, so we are gaslit and ignored. It’s a full-time job trying to stay alive and the system is against us. But as online advocates, we try to shed light on the struggles within the system. Yet when an advocate is posting about their struggles getting a diagnosis or is in the hospital excessively, they are often assumed to be faking or attention-seeking.

Anyone else worried they will be called a fake #Disabled person?

Bullying

In the documentary, one of the advocates speaks about how she was harassed and bullied by people on the internet. This kind of bullying can have detrimental effects on someone’s mental health. I have known many advocates who have gone through this and have had to take a break from their social media due to mental health reasons or decided that they weren’t going to return to social media at all. These were people who were very involved in advocacy. But because they had medical issues, were in and out of the hospital, were undiagnosed, etc. they were targeted by people and accused of faking it or considered to have Munchausen syndrome. The “illnessfakers” subreddit members comb through advocates’ posts, judge them, call them names and bully them. Many of these advocates are struggling to find a diagnosis and are often in the hospital for different reasons. The documentary also failed to recognize that some chronic illness advocates the subreddit targeted have passed away from their illnesses.

Chronic Illness Advocate, Not Influencer

Throughout the BBC documentary, the reporter refers to the people who share their disabilities online as “chronic illness influencers.” They suggest that these “chronic illness influencers” often use their conditions to gain followers, make money, and attention. I found this extremely upsetting as someone who is a chronic illness advocate. I am not a chronic illness influencer, I am a chronic illness advocate. I do have chronic illnesses, a disability and a mental illness. I am an advocate for those conditions. As an advocate, I share my experiences, research, and knowledge. I’m here to advocate for myself and others who are voiceless. I use my presence on social media to talk about the injustices in the healthcare system. What I’m not on social media to do is to “influence” and sell people products they don’t need. When I do promote products, they are items that help me adapt to my surroundings in an able-bodied world. However, I am not a chronic illness influencer.

Why do some chronic illness advocates post their most intimate, vulnerable moments for the internet to see? Well, first of all, many of our answers might be different. I am not the speaker for all advocates, just like the illness fakers forums have no place to judge what advocates post for their followers. I post my most vulnerable moments because I used to feel alone. Being a young chronically ill person had a severe effect on my mental health. I wish I had the resources and the outlet I do now when I was a teen. Now that I have a place to share what I’m going through and others who have knowledge and experience, I’ve felt less alone. Many advocates have done extensive research and knowledge on their illnesses and have helped many others to get a diagnosis too. We should continue to promote a positive atmosphere for support instead of conforming to ableist society and bullying those who share their stories.

For those of you who see someone online sharing their disability with the world and believe it’s a cry for attention or that they are faking it, ask yourself, why do you feel like that? What is preventing you from believing someone’s experience that might be different than your own?

Let’s remember that everyone’s bodies are unique and so are their disabilities.