“My diagnosis isn’t a debate. My pain isn’t a performance. And your ignorance isn’t my responsibility.🖕🏻”

How many of you have ever felt dismissed or misunderstood because of an invisible illness?

Living with a chronic condition like trigeminal neuralgia 2—sometimes called the "suicide disease" due to its severity—means navigating not only the physical pain but also the emotional toll of being questioned, misunderstood, or minimized.

The comment that often lingers in my mind is this one: "You shouldn't talk anymore if your face hurts."

And yes—my face does hurt. All the time. That’s part of the condition. Speaking, smiling, laughing, even breathing cold air can trigger intense nerve pain. But that doesn’t mean I don’t have things to say. It doesn’t mean I should be silent.

🧠 Diagnosis is not a group project

Getting diagnosed wasn’t simple. It took time, advocacy, and persistence. There were difficult appointments, moments of doubt, and decisions I had to make alone. I’ve experienced medication setbacks, tried experimental treatments, and even explored legal action for mishandled care.

So when people offer unsolicited advice or question my experience, it can feel like they’re overlooking all the work it took to get here.

Please know—support doesn’t require solutions. Sometimes just being present, curious, and willing to listen is more than enough.

🌌 Pain isn’t performative

Just because I look fine doesn’t mean I feel fine. Some days I’m able to post art, share photos of my dog, or go for a walk—but even then, there’s a constant current of pain underneath.

Chronic illness often isn’t visible. It doesn’t always look like a hospital gown or dramatic breakdowns. Sometimes, it’s quiet endurance. And even on good days, there’s a cost.

⚡ Ignorance is not mine to carry

I understand it’s hard to comprehend what can’t be seen. That’s why I write. That’s why I share. So others who are going through this feel less alone—and so those who care about us can better understand.

But I’ve learned that I can’t carry the emotional burden of others' discomfort. If someone doesn’t want to understand, that’s their choice. I’m simply no longer available for minimizing or dismissive behavior.

💬 Yes, I will keep speaking

Even if it hurts. Especially when it hurts. Because my story matters. And speaking out helps others find language for what they’re going through too.

My mom, my friends.. they came over. They sat with me on the couch as I cried. They watched TV with me and stayed. Others dropped off the map over the years as, if I didn’t feel well enough to go out to dinner or events… they would just cancel. All I see - is that you wanted dinner and didn’t want to eat alone, plus taking out someone like me is considered charity right? It was never about spending time with me, or you would have. Its been four years.

Choosing to use my voice—even when it’s difficult—isn’t a sign of weakness. It’s a sign of strength.

So if you’re someone who truly wants to support, the best place to start is simple: listen.

#ChronicIllnessAwareness
#TrigeminalNeuralgia
#InvisibleDisability
#CompassionMatters
#SpeakEvenWhenItHurts