Even Pain Glitters: Living With Trigeminal Neuralgia in Daily Life
This morning, I woke up to my phone flashing black and green, a harsh strobe of light. The digitizer was broken—rendering the phone useless. For most people, this is an inconvenience. For me, it’s life-stopping. With trigeminal neuralgia, light and stress can send my nervous system into chaos. And without a phone, I’m not just disconnected—I’m disoriented. I don’t always know where I am.
I had to rely on someone to take me to T-Mobile. What should have been simple turned into four long hours of standing under fluorescent lights and direct sunlight blasting through storefront windows. Four hours of questions, paperwork, screens, and decisions. That kind of environment is unbearable when your nervous system is already screaming.
By the time we walked out with the new phone, my day was already over. The rainbows and kaleidoscope vision—a migraine side effect that about 1 in 4 people experience—had already taken over. My body was shutting down. This is how trigeminal neuralgia turns the ordinary into the impossible.
Pain Doesn’t Just Sit in the Body
Trigeminal neuralgia is sometimes called the suicide disease because of how relentless and severe it is. Imagine your face lit up with electricity, as if your nerves are on fire, and there’s no off switch.
Now add to that the grief of being undermined by people you trusted, the stress of losing your stability, the exhaustion of navigating a hostile medical and social system.
It’s not just physical pain. It’s the emotional pain of having your needs ignored. It’s the mental pain of gaslighting—being told that what you know you need is “wrong.”
Choosing Not to Let It Ruin Me
Here’s the thing: it could ruin me. And sometimes, it does ruin days. I’m not ashamed of that. But I am refusing to let it ruin my life.
The fluorescent lights, the missing molds, the thrown-away medication—all of these are heavy. But they are not the sum of me. My art, my resilience, my stubborn choice to keep going—that is the story I want to write with my life.
I don’t know what tomorrow will bring. Pain guarantees nothing is ever easy. But what I do know is this: I will keep showing up. Even in pain, I’ll keep finding ways to glitter.
With Love,
Elfy & Nicky
