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Dear Trigeminal Neuralgia, the 'Suicide Disease,' I'm Not Giving Up

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Dear Trigeminal Neuralgia,

This time last‎ year I never even knew you existed. Now I know you are so very real. You’re “the worst pain known to mankind,” “the suicide disease.” You live up to these names. Some people with you find no relief and feel suicide is their only way out of your physical, emotional and utterly draining pain.

You now are my every fear. You made me grieve for the life I had before you and the future you will undoubtedly change. My future, while it is there, is now fuzzy. I’d like to say I’m winning, but we are neck-and-neck right now.

You like to make your presence known suddenly, sharply, shockingly and oh so very painfully. You bore pain into my face that I struggle to come to terms with. You are a vicious ice pick being hammered into my ear. Experiencing you is like being struck by lightning to my jaw and cheeks, a live wire connecting to my teeth and shocking me in waves. Set that all on fire, while be crushed by a concrete block all at the same time and that is you, in a nutshell.

As if the pain wasn’t enough, you now affect my financial stability, my mental state at times, my friendships, future, confidence and social life, to mention a few. I fear a breeze, coldness, brushing my teeth, brushing my hair, kissing a loved one, eating. All the things that can set you off. All your little triggers.

There is definitely no ignoring you. You and your incurable ways. However, while you won’t be ignored, you should know I won’t be giving up anytime soon. I am stubborn. I won’t be ignored. I may not always be winning this little war we have going on, but you will not define me. I was here 25 years before you. I may be different now because of you, but you won’t ever fully own me. We need to learn to adapt to each other because you’re not going anywhere…

But let me tell you this… neither am I.

Yours eternally,


If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 18, 2016
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