TikTok content creator shares her journey with Tourette’s Syndrome, increases public awareness
With my shirt torn and untidy, I started recording without makeup. I uploaded the video without previewing it. Watching it later in a calm state felt eye-opening. It startled me to see my movements and behavior during a crisis.
- 3 months ago
January 14, 2024
Lula Del Bianco strikes a pose after creating engaging new content for her TikTok account | Photo courtesy of Lula Del Bianco
MALVINAS ARGENTINAS, Argentina — In August last year, I decided to share my experience with Tourette’s Syndrome on TikTok, exposing my unfiltered reality during a crisis. The response from TikTok users was overwhelmingly positive, connecting me with others who resonated with my experiences. Yet, there are times when nothing can prevent the full force of a crisis.
During these intense episodes, I struggle to maintain control, often resulting in physical harm to myself and my surroundings. The challenge lies in calming myself, a task made difficult by the overwhelming nature of the crises.
Today, I focus on living life fully, valuing time with friends and family, and focusing on my work and studies. Experiences like asking a stranger at my university for help during a seizure and receiving support, have shown me that people can be kind and empathetic.
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Tics: “It took me some time to realize these movements were not voluntary.”
At nine years old, I began experiencing symptoms of Tourette’s. My neck muscles twitched involuntarily, but I mistakenly believed I was doing it consciously. Tics were tricky. The more I focused on them, the more intense they became. It took me time to realize these movements were not voluntary.
Tourette’s often leads to the development of other mental disorders. As a child, extreme hyperactivity challenged my ability to control my strength. During playtime with classmates, I sometimes felt an overwhelming urge to bite and harm them. I could not understand why I acted this way, but I noticed how gradually everyone started avoiding me, and I found myself excluded from playgroups.
In my teenage years, I finally managed to form a solid group of friends, but school became increasingly challenging as my tics grew more noticeable. My whole right side would cramp, leaving me writhing helplessly. Each episode felt like a life-threatening panic attack. Everyone around me seemed to ignore my struggles, leaving me to deal with my confusion alone.
We sought help through various therapies, including psychologists and psychiatrists. One evening, while my father cooked dinner and my mother picked up my brother, I locked myself in my room. I secretly stored some pills there, saving them for a desperate moment. Seeking an escape from my tormented mind, I took them all, hoping it would end my struggles.
The sound of my family returning home snapped me back to reality. Fear of dying overwhelmed me and I realized the seriousness of my actions. I confessed to my mother, “I swallowed a bunch of pills,” as the tears poured down. My brothers could not make eye contact with me, unable to comprehend my actions. My mother, burdened with guilt, rushed me to the hospital.
A turning point in understanding my condition
Eventually, at 14 years old, a neurologist diagnosed me with Tourette’s Syndrome during a consultation with my mother. The news that I would need lifelong medication left me feeling devastated, adding to what I saw as a list of personal failures. Initially, I kept my diagnosis private, acting as if nothing happened.
My classmates knew about my Tourette’s Syndrome but never addressed it directly. Only in 2022, during my last school year, did my condition become unmanageable, leading to a psychological leave. After this, I finally opened up about my struggles in front of my class, which brought immense relief and understanding.
That month off felt therapeutic. I resumed exercising and refocused on my goals, finding ways to prevent Tourette’s from dominating my life. Returning to school felt rewarding, as my peers now showed concern and support during my episodes. Working with my psychologist, I transformed the overwhelming force of my crises into something more manageable. I personified my tics as “Fito,” a hippie-like figure, which helped me view them more amicably.
Additionally, I learned to anticipate the warning signs of an episode. I prepare myself, sometimes taking medication or diverting my attention to conversation. Yet, there are times when nothing can stop the intensity. During such episodes, I lose control, physically harming myself and my surroundings. During those moments, I try to calm myself down. However, the severity of the crisis often drowns my inner voice. My journey with Tourette’s has taught me to accept and coexist with this part of my life, transforming a challenge into an aspect of my identity that I now embrace and understand.
Embracing life with Tourette’s, exposing a complex syndrome on TikTok
After a crisis subsides, I often grapple with guilt for having disrupted the normalcy of those around me. Despite assurances from others that everything is okay, I often apologize. My family, however, has learned to approach these situations with humor. My brother jokes about developing Spiderman-like reflexes to dodge my unintentional blows.
Sometimes, during a crisis at mealtime, everyone scrambles to remove knives from my hands, later sharing these moments lightheartedly. If we treated each episode as a tragedy, moving forward would be impossible.
In August last year, I sensed an impending crisis and decided to expose this part of my life on TikTok. With my shirt torn and untidy, I started recording without makeup. I uploaded the video without previewing it. Watching it later in a calm state felt eye-opening. It startled me to see my movements and behavior during a crisis.
The response to the video became heartening. Many people, especially those with various conditions, reached out to express their connection with my experience. They appreciated my decision not to center my content around Tourette’s, acknowledging it as part of my life but not the entirety of it.
Today, I focus on enjoying life in ways I could not before. I go out with friends, spend time with my family, work, and study. I embrace the positivity in my life. Occasionally, I experience seizures in public. The first time I asked a stranger for help was at university. I approached a girl, asking her to hold my hands to prevent me from hurting myself or others. Without hesitation, she sat beside me, holding my wrists tightly until I calmed down. Her kindness made her feel like a sister, even though I did not know her name. Knowing that people are willing to help has brought me immense comfort and reassurance.
