Living With Trigeminal Neuralgia – My 10-Year Journey

For the past 10 years, I have been living with Trigeminal Neuralgia, a rare and often misunderstood neurological disease. It is a condition that has changed my life in ways words sometimes struggle to explain.

The pain is sudden, intense, and unpredictable — like electric shocks to my face.

Simple everyday activities such as talking, eating, brushing my teeth, smiling, or even feeling a light breeze can trigger unbearable pain. What others do without thinking can feel like a mountain to climb for me.

Living with Trigeminal Neuralgia is not just about physical pain. It comes with emotional, mental, and social challenges.

There are days when I look “fine” on the outside, but inside I am fighting a silent war. Because it is a rare disease, many people don’t understand it, and that lack of awareness can make the journey feel lonely.

Despite everything, these 10 years have also taught me strength, patience, and resilience. I have learned to advocate for myself, to speak up when I am not okay, and to keep going even when the pain tries to silence me.

On Rare Disease Day, I share my story not for sympathy, but for awareness, understanding, and support. Rare does not mean invisible. Rare does not mean unimportant. And those of us living with rare diseases deserve to be seen, heard, and believed.

To everyone living with a rare disease: you are not alone. Your pain is real. Your strength is powerful. And your story matters.

My name Ramohlale Mmaphuti a Trigeminal Neuralgia Warrior.

Is Rare but is Real 🩵