By Carol Levy, PNN Columnist

For many of us, pain is sporadic. Sometimes we know exactly when it will be start or what will set it off. Other times, it may hit spontaneously.

When my trigeminal neuralgia pain started in 1976, it was constant, triggered and spontaneous. Now it can be triggered by any touch to the affected area. Or it can come out of the blue.

When I don’t have pain, it often lulls me into denial. I’ll think, “Hey, I'm okay!” Denial is one of my defense mechanisms. I don't have the pain right now, so I won't have it. 

And then, like a freight train bearing down on me, the pain hits. That's when the denial ends. Sometimes it takes only a few minutes to recover, sometimes much longer.

Denial of pain also comes from friends, colleagues or family. It often results in an argument or anger. Does that change their denial? Not often.

Is it worth the hurt and emotional pain when we try to change their minds, when we try to convince them of the reality of our pain? Again, not often.

Many of us have had medical professionals refuse to accept our pain. Years ago, I found this note in my neurologist's chart: “There are days like today when I believe in her pain.”

It wasn't his to believe in or not. If he chose not to believe me, then the remedy was simple. Fire me as a patient. It is not worth debating with a doctor about the existence of our pain.  

A big pain trigger for me is eye movement. Any eye usage causes pain. I can read, sometimes for as long as 20 minutes, before the pain starts yelling at me and I am forced to put the book away.  

Too many times I don't want to give in to the pain. Just one more paragraph, I’ll think, or at least a sentence. If I try to deny the pain and continue to read, it grows stronger, bigger, a green hulk of pain.  

Then I have no choice. I fling the book away and wait, sometimes for hours, for the pain to subside to a tolerable level. I could have stopped the pain. I could have taken control over it. All I had to do was accept that I can't read for as long as I want. But, like a food addict, the pleasure I get from reading overwhelms my common sense.

For those of us struggling to stop denying the pain when we know we should, the denial only adds to our battle. We call ourselves “survivors” or “victims.” Those are words of war.

For me, the war isn’t over. If and when I win, I'll stop the denial. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.