It started with a grandparent in critical care due to cancer, and now it’s become a chronic disability. Since then, they’ve become physically injured, laughed at and have been told that their disability is a trend. This is Eli and Jo Anderson’s ‘27 reminder that not all disabilities look the same, and they simply want people to “just be tolerant. Don’t be weird.”

Tourette’s syndrome (TS) is defined by Oxford Languages as “a neurological disorder characterized by involuntary tics and vocalizations and often the compulsive utterance of obscenities,” but it goes much deeper than that. For some, Tourette’s is categorized as a disability by the American with Disabilities Act (ADA), while for others, TS hardly affects their life. It’s for this reason that many people with TS struggle with the classification of their condition.

“People with Tourette’s are just people that happen to have Tourette’s… There’s not a personality trait that goes along with [Tourette Syndrome]…The stereotype along with people with Tourette’s is not always true,” Eli said.

Both students were diagnosed with Tourette’s syndrome in 7th grade, a time when it wasn’t viewed by peers as a serious condition. Although the medical specialists assigned to their case were acutely aware of the signs of TS, the requirements to be officially diagnosed couldn’t be done in a single visit. A patient must have two verbal and three motor tics for over a year to be diagnosed. 

Fear with Tourette’s

Even with a diagnosis, both twins still felt some degree of fear with having TS. Social media and having each other as a ‘precedent,’ they said, lessened some of that, but the fear was still real. When coming to in person classes, one of their fears came to fruition many times.

“It affects so much of your social life, and it really brings down your self esteem and makes it feel like everyone is watching you because, really, they kind of are,” Eli said.

Both Eli and Jo have several motor and vocal tics like making a ‘tweety bird’ whistle, meowing or telling peers “you look like a silly goose.” Physically, they have tics that compulse them to kick their legs out randomly, collapse like a ragdoll and throw their head back when they sit against a wall. These tics, they admit are sometimes funny, do put both of them in dire situations socially and physically.

“I couldn’t report [other students for bullying]. All they were doing was whistling at me and that triggered my tics,” Jo said. “It was just a bit dehumanizing to be laughed at like that.”

Eli, at one point, had to have padding attached to his wrists due to extreme pain from the bruising from his tics. Similarly, Jo had to learn different ways to get downstairs in their house after a tic repeatedly caused them to fall down the stairs.

TS also impacts other parts of the twins’ lives, including thoughts of having children, serious relationships, attending events like weddings or funerals or simply even driving.

“I was scared that I wasn’t gonna be able to drive because I was scared that I [would] turn the wheel and drive off into a ditch,” Jo said.

Currently, neither twin has a tic similar to that, but tics aren’t a set pack. Day-to-day, new tics can be picked up, while others ‘disappear.’ There is no way to know for sure what the next tic will be or how much either twin will tic in a day. However, a major factor in predicting tics is based on surroundings and stress, respectively.

“Sometimes it’s a word that I’ll hear that I’ll repeat, but most of the time it happens randomly,” Eli said. “I have about a tic a minute, but it changes depending on my anxiety levels… it gets worse some months and then it gets better in others.”

Faking Tourette’s

During 2021, when the twins were diagnosed, they both experienced a first-hand account of Tiktok’s popularization of Tourette syndrome. During this time, TS was never seen as a serious disability. It was almost viewed as a fad.

“I had three friends who just faked Tourette’s syndrome, because they thought it was trendy. And that ended up triggering my tics, and my tics got worse. And it was just so bizarre to me that they thought it was cool to have to live like that,” Jo said.

A study by the National Library of Medicine found that during the time of March 11, 2020 and March 30, 2021 on Tik Tok an overwhelmingly majority of the subjects they found to be posting videos with hashtags of tic, Tourette or tourettes had “Coprolali, coproaxia, and self-injurous behavior” as a majority of their tics. This seems to clash with what the Center for Disease Center (CDC) states on their website for TS. They say that only 1 in 10 people with Tourette syndrome have coprolalia. This seems to indicate that most people online were likely faking it. Even to this day, the twins experience self designated ‘Tourette’s detectives’ calling the twins out for faking the condition.

“Personally, as someone who has experienced people thinking that I’m faking, it sucks so much worse… It doesn’t really matter if someone’s faking, but if you accuse someone of faking, who’s not, then it ruins their life,” Eli said.

Overall, the twins face challenges in all forms with their Tourette’s. It’s not something that they pity about themselves though, it’s an undeniable fact of their life. And at the end of their day, they’re not asking for much, just for people to be open-minded.

“Just try to be aware that people are different, you know? Just be tolerant. Don’t be weird. That goes for everything,” Eli said.