Life with Tourette: Stories of Resilience and Hope

When Avitar Lerner boarded a bus two months ago, his plan was simply to travel from the center to the north. However, his Tourette Syndrome, which he suffers from, led to an episode of tics. The teenagers next to him began to mock him: 'Bark, kid, bark,' they taunted, responding to the vocal tics that resembled a dog's bark. 'I have always been embarrassed to talk about my daily struggles,' Lerner later wrote in a heartfelt post that went viral. 'But today I feel I must share and reveal a bit about what I endure due to Tourette.' He explained that his syndrome manifests with loud sounds that sometimes resemble barks. Despite explaining his condition to the teens, they started filming him for their Instagram and mocked him. 'Right now, I'm going through a really tough time with Tourette, so my sounds are very loud and noticeable. I want to ask—think twice before you laugh at someone, be humane.' Though heartfelt words and widespread sharing raised awareness, it wasn't enough. Since then, many more posts by teens and adults living with Tourette have emerged, showing that they not only deal with a challenging condition but also with societal judgment, often leading them to isolate themselves. We wanted to delve deeper into these experiences, so we reached out to four individuals with Tourette Syndrome to reflect their realities. Here are their candid monologues. **Alexandra Krasno-Klugerman: 'It Hit Me In My Most Vulnerable Spot'** 'Tourette started for me very early,' shares Alexandra, 35. 'My parents say I had symptoms as early as one year old, but the prominent tics began at six, with a definitive diagnosis around age twelve. I don't remember much, just the numerous tests I underwent, some under anesthesia, until the doctors confirmed Tourette Syndrome. 'Tourette manifests in different ways for me—initially it was mostly blinking and head movements. Later on, as I studied in a high-pressure school, it worsened. Added to the existing tics were shoulder and finger tics, eye rolling, and loud breathing noises, as well as body jerks. Managing all of this was challenging, especially because I was a top student with learning difficulties and attention issues—traits sometimes associated with Tourette. 'Social reactions were not always supportive. Kids called me names, laughed, and found numerous excuses to make fun of me. Transitioning to a nearby high school with fewer academic demands helped ease my anxiety. 'Today, I'm married, a mother, have two degrees in special education, and teach remedial classes. The tics remain but don't prevent me from working as a teacher for over a decade. I feel a special calling to work in special education. At the start of each school year, I tell my students about my Tourette, and it bonds us. They see that I'm not preaching from a pedestal but dealing with challenges myself.' 'The only time Tourette really hindered me was when I was laid off from a school job. The director told me: 'The work here demands a lot, and we've decided to let you go so you won't be stressed, as we both know Tourette can flare up under stress...' That comment hit me hardest. I told her that I knew how to manage my Tourette and take care of myself. I left that job and didn't share my condition at my new workplace for a whole year. My heart still aches when I recall that conversation.' Alexandra believes that increased public awareness of Tourette would make things easier for everyone. 'On one hand, you can't blame people for reacting insensitively; they might not know. On the other hand, we all need to be more considerate and try to understand what others are going through. Even I, with relatively mild symptoms, face daily challenges. It’s not easy, and it's exhausting. 'Recently, during a sports practice, my tics flared up, including throat clearing. Afterward, I apologized to the group and explained it was part of the syndrome. They responded so beautifully and said, 'We didn't hear anything,' even though they clearly did. That’s the kind of response required, and it’s not too hard to understand.' **Bar Gentovnik: 'I Decided to Approach Tourette with Humor'** 'The tics started when I was about nine, with a diagnosis made at ten,' shares Bar. 'There was no warning—it started one day and hasn't stopped. 'For me, the tics are mostly motor-based—neck movements, eye rubs, and finger snaps that sound like high-fives. As a kid, I didn’t pay much attention, even though it bothered me. But over time, it became more annoying and unavoidable. Friends began to mock me, and I took a lot of beatings at school. To this day, I still face societal challenges. Though not physical today, the reactions can be just as bad. During the first COVID vaccine period, I had a small tic episode while waiting in line at a store. The person in front of me gave a judging look, and I replied without thinking, 'Oh, sorry, it's the side effect of the first vaccine.' 'Sounds like you manage to keep a sense of humor...' 'Exactly. I know so many people with Tourette whose lives are shattered due to societal reactions, but I decided from the start to handle mine with a smile and a healthy approach. I even began giving talks on Tourette, believing that speaking publicly can also help others. My lectures are mostly in schools—I share my childhood experiences and add that at a certain point, the challenges affected my health and led to overeating and hospitalization. I explain to children the connection between emotions and Tourette—the strongest influence is stress. As stress rises, so do emotional eating and the tics. It’s a holistic effect. 'I'm grateful not to be in the distress I once was, because from that great struggle, I understood that I had no choice but to help myself. I left the hospital and started anew. I knew that while I couldn't change having Tourette, I could change how I respond to what's around me. 'There are definitely things I have to give up on, it happens almost daily. In many cases of Tourette, it's accompanied by OCD—compulsions. For me, it manifests in certain rituals and actions I must do throughout the day. I find being flexible difficult, as everything is so rigidly fixed for me. I'm trying to work on it, but it's not easy, and the journey is long. It’s a personal mission—a lifelong task.' 'Do you also think public awareness can help?' 'I have no doubt. I always talk with friends who have Tourette and we all believe we need to discuss it constantly and never remain silent. This applies not just to us but to any disability or limitation. The more it's talked about in different forums, the more awareness will rise, and people will become a bit more empathetic.' **Tali Braier: 'I Avoid Public Transportation'** 'I'm 23 and work as a special education assistant. At 15 and a half, I developed Tourette Syndrome after a severe strep infection. The strep came with a fever, and then the tics began; when the fever subsided—the tics stayed. Now, they manifest in my hands, legs, shoulders, head, and basically the entire body, with vocal tics, too. Unfortunately, at 20, things worsened. 'I try to lead a regular social and family life, leave the house, work, and take public transport, but is it easy? Definitely not. Before every outing to a public place, I think long and hard. Sometimes I even forgo going out. It’s uncomfortable encountering people who mock my movements and sounds; I feel like I'm disruptive just by being there. 'How do you respond to comments about it?' 'I explain it’s a syndrome and there's nothing to do, but people continue saying: ‘I know what Tourette is, but if you can’t control it, just stay home’ and the like. Another misunderstanding is that I can’t wait in line due to my severe tics—I might end up hitting myself, dislocating joints, or alarming those around me. But I don’t have a line exemption because you need more than 50% disability to qualify. Tourette sufferers usually receive much lower ratings, although it’s a disability in every sense. This limits me in getting medications and sometimes leads to missing medical appointments.' 'What many don’t realize is that Tourette also comes with intense pain. During an episode, I can’t do much; everything hurts, and there's no medicine for it.' While there is no cure, Tali, like her peers, believes that with some sympathy, consideration, and understanding, their daily challenges could be eased. 'I hope things will change,' she adds. **Natalie Pesikov: 'I Closed My Business, I Don’t Leave the House'** 'My tics are very severe. They began abruptly when I was almost twenty-four. No event triggered them; it was just a regular workday when the eye tics started, quickly escalating to the whole body. I had to go to the ER, where I spent many hours but was discharged with no diagnosis. No one knew what was happening to me. About six months later, the tics reduced but soon returned daily. Sadly, my condition has only worsened, and for the past year, I've had every possible type of tic. My Tourette is severe—both vocal—screaming—along with motor tics, where my whole body moves, arms flail, and my head hits walls. This is why I rarely leave the house. 'And what about the job you mentioned? 'I was self-employed, running a baking supplies business. After the first episode, I tried continuing my work as usual, but once Tourette became a daily occurrence, people just stopped coming; I can understand them—it’s not pleasant and can be a bit frightening. There's also the constant pain that never leaves because the tics happen 24/7. Some are internal and unseen, but they're always somewhere in the body. There's no cure for Tourette, and nothing to alleviate it. There are times I can't even go to the bathroom alone... 'Psychologically, how did you handle the shift from being healthy to having a disability?' 'I tried to accept it with grace. Some family members are incredibly supportive and are my anchor. Yet, others get really scared. Different from what others experience, I've noticed the younger folks more readily accept and see me as a person beyond the episodes, whereas older ones struggle. I have a physically disabled relative who cries every time he sees me. He says he can’t bear seeing me like this. 'Could anything have been done to make it easier for you?' 'Of course, it would be wonderful if people showed understanding and continued to visit my business despite my Tourette. I could keep working—that’s my life's aspiration. Ultimately, no one wants to shut down their business. What would also help is if the state offered me an exemption from waiting in line, whether at doctors’ offices or stores. Honestly, the few places I go are the health clinic or pharmacy. In such places, whenever there are other people, even just one or two, my Tourette immediately spikes because it’s known that stress heightens episodes. I wish someone could change that and at least save me from standing in line.' Natalie concludes on an optimistic note: 'It's important to emphasize that behind the Tourette, there are ordinary people—no different from anyone else. They can have amazing personalities, be funny, interesting, and intriguing. We don't do anything harmful, and even if we look a bit different initially, you can always ask us about it, and we’d be happy to answer and share our story.'