25 Things People Living With Trigeminal Neuralgia Wish Others Understood

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There are few rare diseases known that are as painful as trigeminal neuralgia (TN), a disorder of the fifth cranial trigeminal nerve. In fact, TN is often referred to as the most painful disease known to humankind. Many who live with it experience stabbing and throbbing pain throughout their face, which can be unpredictable and easily triggered. Because TN is so debilitating, it can lead to an inability to even brush one’s teeth, let alone participate in social events. The resulting isolation can cause a decrease in quality of life and worsening of one’s mental health.

To help combat the isolation, fear, and living in the unknown, it is important to raise awareness. The Mighty teamed up with End Trigeminal Neuralgia, a Facebook community page that provides resources and emotional support to people living with TN, to ask our communities, “What’s one thing you wish others knew about living with TN?”

Here’s what the community had to say:

  1. “My face feels like it has been hijacked and day after day I hang on by a thread sometimes. It hurts to live.” — Irene D.
  2. “I may look like I’m not interested, but that isn’t it. I’m in intense pain and you just can’t see it.” – Barb B.

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