Targeting 'Illness Fakers' Doesn’t Help Disabled People

As someone with Tourette’s, I get a lot of TikToks sent to me asking, “Is this real?” or “Do you think they’re faking it?”

There’s been a recent boom on social media, particularly TikTok and Instagram, of content relating to disability activism and other health awareness. I love watching this type of content because it makes me feel connected with others like me and reminds me that my experiences are valid. TikTok has been a way for many people with Tourette’s and other conditions to express themselves. Unfortunately, a lot of these accounts are accused of faking.

I’m aware of the subreddits and other blogs about illness fakers and why they do what they do. They make me angry, but people who take more time investigating the legitimacy of an illness tend to make me angrier. Do I condone people who actually fake illnesses? Of course not. But I regularly see more harm done by people accusing disabled people of lying about their struggles.

People with Tourette’s are often accused of faking their symptoms due to several factors. Sometimes it is the perceived absurdity of their tics. Other times in more mild cases, they are dismissed as being something else entirely.

In many of the Tourette’s support groups I’m in, accusations of faking by parents, educators, and other adult figures take a toll on children’s mental health and self-esteem. This can also lead to problems with self-esteem in adulthood. According to a study, 68 percent of people with either Tourette syndrome or a chronic motor tic disorder report discrimination against them due to their tics. Many also simply avoid public places, cancel or skip job interviews, or simply don’t pursue promotions or other opportunities at work due to fear of discrimination. For children, 35 percent are perceived as less “popular” than other children due to their tics.

Kids with Tourette’s and other disabilities often struggle to get proper accommodations due to the stigma of what Tourette’s “should” look like. Despite 1 out of 333 children in the United States alone being diagnosed with a tic disorder or Tourette syndrome, I often hear from people that I am the first person with Tourette’s they have met, even if that is statistically unlikely. It is estimated that as many as 500,000 children have a tic disorder that may develop into Tourette Syndrome. Even then, I am still told that I “manage my tics well” or “it doesn’t even look like you have Tourette’s.”

But what most people don’t see is how I suppress them out of instinct to make others more comfortable. Some days are better than others, and I doubt most people would recognize how I tic in the comfort of my nonjudgmental home.

The boom in TikTok Touretters may also have to do with recent events. Stress tends to worsen tics, and if there’s ever been a stressful time in human history, a global pandemic is one of them. Many people with diagnosed Tourette’s and tic disorders feel alienated due to encouragement from medical professionals to suppress or divert tics that may not be causing them harm in the first place. They may also be encouraged to hide them in order to avoid judgment. Some people have tics in childhood that disappear, only to reappear in their adult life. (Hi, that’s me, diagnosed at 22.)

The stigma surrounding Tourette’s, not really the potential “fakers,” does more harm towards me and others with Tourette syndrome. Some tics are much more simple than what people associate with Tourette’s, such as sniffling, tapping, snapping, grunting, and other more concealable actions. In fact, it is estimated that one out of 10 people have some form of Tourette’s. It typically manifests in childhood, but can develop or worsen at any age.

I would rather people use their time to donate to organizations that represent our interests and needs. I would rather see people learn more about various chronic conditions and disabilities from these organizations and disability activists than spend time figuring out if someone shouting “Beans!” is legitimate or is being said because they’re “clout-chasing.”

Spend less time worrying about the illness fakers. At some point, it will get tiresome or they will pull a muscle imitating the very tics that give me chronic muscle pain anyhow. Regardless, I will still have Tourette’s and nothing will change that. But what can change is how people use their time to truly help disabled people.