Monday, October 7th was the first annual International Trigeminal Neuralgia Awareness Day. It was a wonderful success. Monuments, bridges, and buildings throughout the globe were lit in teal, the color for TN awareness.
CNN Health did a story on it and word went out throughout the land. It was only the first day, but all who helped to make it possible deserve a loud round of applause.
One of the things about trigeminal neuralgia, besides the horror of the pain, is the insidiousness of the fear that accompanies it.
For most of us the pain occurs spontaneously — often triggered by something as simple as a slight breeze or a wisp of hair touching against the affected side of the face. Going outside, someone walking by too closely, a light rain; all can cause as much panic and terror as if we were on a roller coaster without a safety bar.
Even after the pain is gone, if you are lucky enough to have a successful surgery, find a drug that works, or have a very rare spontaneous remission, the fear remains.
One person whose trigeminal neuralgia had not been active for years was very upset with her friend.
“What’s the big deal about Trigeminal Neuralgia Awareness Day?” asked the friend. “After all your pain ended years ago. Why do you even care anymore?”
She cared because even after years of being pain free, not a day goes by where she is free from that fear.
No one would ever say to someone with cancer, “Well, you had cancer and now it’s gone. I don’t understand why you would even give cancer another thought or why you might be afraid it could come back. ”
I am lucky. This November I will celebrate 15 years of freedom from two aspects of the pain. Nevertheless, the fear lurks. It has lessened over the years, but I still find myself looking at a leaf blowing along the ground and immediately think, “Oh no. It’s breezy. I can’t go outside. It will set off the pain!”
With each passing year those thoughts become easier to stop. The times when I see rain and don’t feel afraid finally outnumber the times when the fear comes.
It is easy to put a lot of the inability to understand what we go through to the invisibility of pain. And if you no longer have the pain then why should we care?
People need to understand that pain can be, in its own way, just as malignant as a cancer. That is why awareness days are needed, not just for trigeminal neuralgia, but for all the chronic pain disorders.
I wait for the day when we have cures for all the chronic pain conditions. I also await the awareness, acceptance and understanding of chronic pain, in all its manifestations.
Just because it can’t be seen and even when it is no longer there, it still remains — a painful memory within our souls.
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 was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.