It is not often that people ask me about my pain. When it does come up, I say I have trigeminal neuralgia. If necessary, I explain what that is, and describe the pain and what triggers it.
I also tell them that I am very lucky. I had a rare spontaneous remission of the worst of my trigeminal pains: the pain triggered by touch, spontaneous pain, and, in my case, constant pain.
I also have eye pain. Unfortunately, that pain — from any sustained eye movement or eye usage — does not stop. It is what continues to keep me disabled.
When I tell people that, I’m often asked, “Can’t you just patch the eye? That should stop the pain.”
It sounds logical. One eye hurts and the pain comes from using that eye. So it is easy. Just don’t use that eye! The problem is eyes do not move independently of each other. The right eye moves and the left eye automatically follows the right’s movement.
I used to get annoyed when this conversation occurred. There was (and is) often an undercurrent of: “How silly of you. The pain could easily be stopped if you thought it through.”
I think all of us have told someone about our pain only to have the other person look at us askance. “Why don’t you just use a heating pad, bend a different way, or use a hose instead of a watering can?”
They seem to think we are silly, or worse, for not thinking of such simple fixes ourselves.
When people say they have eye pain too and try to equate it with my pain; when I read the experiences of others in various chronic pain support groups and hear this theme repeatedly, it is hard to know how to deal with it.
Sometimes the other person wants us to know they understand having the same experience. Other times, unfortunately, the person uses it as a competition or a refusal to accept that we may be in a much worse situation then they are.
If it is the latter, there is not much that can be done. It is one of those times when you have to make an active decision as to whether you want to keep that person in your life. It is a decision of which is worse: Dealing with their drama or taking the possibly drastic move of ending the relationship?
If we are lucky, we do not have to consider either of those.
The other person honestly wants to help us, honestly cares, and truly wants us to not have pain, or at least to have less pain. Their suggestions on how to “fix” the pain is through the lens of their own experience, usually acute pain with relatively easy answers; tincture of time, don’t use the arm for a while and so on.
The “fix” is on both sides.
They can be fixed through education, and a willingness to accept who we are and what we have to deal with.
On our side, our fix is learning to take the help and support that is offered — even when it is not what we want to hear.
And cleaning out our lives when necessary.
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 represents 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.