Woman with Tourette’s syndrome uses social media to raise awareness of condition

AMMAN — Haneen Al Tamimi, a 20-year-old university student who was diagnosed with Tourette’s syndrome, said she was bullied throughout her life and now uses social media as a chance to educate people on her condition.

Tourette’s syndrome is a condition that causes a person to make involuntary sounds, movements, or verbal “tics”. Examples of physical tics include blinking, eye rolling, grimacing, jerking of the head or limbs, touching objects or other people and more, according to a physician who preferred anonymity.

Examples of vocal tics include grunting, throat clearing, whistling, tongue clicking, animal sounds, saying random words and phrases and repeating a sound, word or phrase, the physician said. 

Diagnosed around seven-years-old, Tamimi told The Jordan Times that as a Tourette’s patient, she was “easy prey” for bullies during her school years.

“I suffered a lot, even with teachers, due to the lack of awareness of such rare syndromes,” she added.

According to Tamimi, many other issues are associated with Tourette’s syndrome, such as anxiety, social phobias, and stress. Tics are present throughout the day for a person with Tourette’s, but occur in varying degrees of severity based on the psychological state of the person, said Tamimi.

“Stress is a very important factor in Tourette’s syndrome. If the patient is relaxed, the movements are lighter than if the person feels tense or stressed,” Tamimi added.

“In school, there were girls who refused to talk to me because they were afraid of me. Others were scared that I would infect them, while others believed that the cause of my illness was a spiritual thing such as djinn and so on,” Tamimi said.

She stressed that she suffered “greatly” due to the many hurtful words she was subjected to.

“However, as I got older and learned more about my condition, I was able to accept myself. I was proud of myself, and I turned it into a message of awareness for the whole world. But of course, some challenges still remain, such as ignorance and hateful comments, especially from groups that are uneducated on Tourette’s syndrome,” Tamimi said.

According to Tamimi, people also discourage her from finding a job due to her condition. “Everyone keeps telling me that I will not find a job as no one will accept me because of my illness, which is very unfortunate and discouraging,” she said.

Tamimi used social media to achieve her goal of raising awareness. “I started an official page for Tourette’s syndrome in Arabic on Instagram in 2021, and a TikTok account in 2022. Of course, I was subjected to some attacks and denials of my condition, even though I posted a medical report with my diagnosis,” she added.

Tamimi has now reached 33,000 TikTok followers, which motivated her to continue her journey of raising awareness and realising her ambitions for the future, she said. She noted that social media is the “best tool” available today to teach people about such things.

“The presence of thousands of people who supported, encouraged and motivated me to spread my message pushed me to believe in my purpose even more. I aspire to reach millions of followers, and I hope I get the chance to be part of a conference or event supporting Tourette’s syndrome patients,” Tamimi continued.

Tamimi said that she ultimately aspires to launch a Tourette’s syndrome association in the Middle East, similar to the Tourette’s Association of America, which has no branches outside of North America. “Unfortunately, there are no forms of support for Tourette patients in our region,” she concluded.