As Tourette Syndrome Awareness Month, observed annually from 15 May to 15 June, draws attention to the realities of living with the condition, writer Tabby Kibugi reflects on her own diagnosis she shares how living with Tourette’s has deepened her understanding of God’s patience and grace in the midst of circumstances she cannot change.
Four years ago, I was diagnosed with Tourette’s Syndrome. The symptoms started in early 2022 with a few involuntary jerks and twitches in my arms, shoulders, and neck. Since I was in my final year of university, I attributed them to exhaustion and stress because of the workload and upcoming final exams. Sometimes, I could feel the twitches coming, which made the anticipation even worse.
Like most people I’ve spoken to who experienced motor tics for the first time, I started convincing myself that I could suppress them. Usually, I was only successful for a couple of minutes before the movements began again. Then came the vocal tics. By the time I was experiencing those, I could already sense that something was seriously wrong. I’d spend hours doom-scrolling online, trying to understand whether anyone else could relate to my experience, but that only succeeded in fuelling my anxiety. Finally, I decided to tell my family what had been going on. Even though Tourette’s had frequently come up during my online searches, it was the last possibility I considered.
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When my neurologist finally diagnosed me with Tourette’s, I initially felt relieved.
When my neurologist finally diagnosed me with Tourette’s, I initially felt relieved. I finally had an answer to what I’d been experiencing for months. On the other hand, I went through a long period of grief after being informed that the condition had no cure, only treatments to help control the severity of the tics.
Tourette’s Syndrome is characterised by involuntary motor and vocal tics. These movements range from mild to severe and can include head jerking, shoulder shrugging, repeating certain observed actions, eye darting, and more. It’s also very typical for tics to change over both the short and long term. For instance, I’ve had phases where my tics became more pronounced, followed by periods when I would hardly experience even a small jerk. Contrary to popular belief, not all of us with Tourette’s involuntarily swear, a symptom known as coprolalia, although it can occur in isolated incidents.
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While there is currently no cure for Tourette’s, behavioural therapies such as Comprehensive Behavioural Intervention for Tics (CBIT) are available and can be beneficial for some people. Most people are prescribed medication and manage their symptoms by controlling external factors that can trigger tics, such as stress.
For months after I was diagnosed with Tourette’s, I’d monitor myself constantly, especially when I was in public. The irony was that the harder I tried to control the tics, the more they happened. Before Tourette’s, I had never really considered how much of my life depended on being in control of my movements. Tourette’s challenged all of that. As Christians, we’re constantly told about surrendering control to God. It’s one of those things we assume should come easily until life presents us with something we genuinely cannot control. For me, Tourette’s became an unexpected lesson in what true surrender to God actually looks like. Alongside the loss of control came something else: shame.
Experiencing tics in public was one thing. The fear of how people might perceive them was another.
Experiencing tics in public was one thing. The fear of how people might perceive them was another. I worried about drawing attention to myself and feared that people would think I was seeking attention. I’ve previously written about how, during a crowded church service, I experienced an involuntary tic involving an offensive word that left me deeply ashamed as my brother tried to explain my Tourette’s to the congregation. After that incident, I spent a long time praying that God would take the condition away, and there were many moments when I wondered why He wasn’t doing so.
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Yet while I struggled to be patient with myself and searched for ways to control my tics, God never seemed to lose patience with me. Through all my frustration and disappointment, His love for me remained unwavering. One verse I’ve relied on since my diagnosis is Isaiah 42:3: “A bruised reed he will not break, and a smoldering wick he will not snuff out. In faithfulness, he will bring forth justice.”
For a long time, I worried that my struggles made me less useful to my friends, less capable, or somehow less worthy, even in God’s eyes. But this verse reminds me that in my weakness, and amid all the challenges I experience, God is patient. He cares and willingly extends His grace, love, and compassion. He understands the burdens we carry, including the ones we wish we didn’t have to bear.
Sometimes, I still find myself asking questions such as why this condition had to affect me and not someone else, or what my life might have looked like if I had never developed these symptoms. For instance, an internship in customer service that I was undertaking was no longer viable after my diagnosis. On days when my tics are more severe, I try to remember that my identity is not defined by a diagnosis or by my limitations. I am defined by the fact that I am loved by God, just as I am, and that is enough.
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