I am a member of a number of online support groups. I mostly comment on only one, where I am the administrator, but I like knowing the others are there. I know I’ll find support if and when I write a post or reply to a comment.
There is a trigeminal neuralgia support group in Philadelphia. It meets 6 times a year and often there is a speaker. The last time I went the presentation was interesting, but there was no time for support. No opportunity to bond or exchange information, compassion, or the empathy that one usually looks for in a support group.
I used to go more often when it was a “real” support group, where members shared their stories and asked for — and got — help and support.
Margaret was the only person who attended who no longer had pain. She always said at the start of each meeting, “I want people to know you don’t have to have this forever.”
We liked having her in the group. It gave us a different perspective. Maybe the pain will stop or even be cured.
I do not recall Margaret ever telling the story of how her pain stopped, whether it was from medication, surgery or the most rare of recoveries – a spontaneous remission. But that was okay. She did not have the pain anymore. That was enough.
I find in the support groups that it is very rare for someone to comment or attend who no longer has pain. That makes sense. If my pain went away, I would not want to be reminded of it or talk about it. I would to put it in the past and leave it there.
I have not had the worst part of my trigeminal neuralgia — horrendous lightning-like pain striking out of the blue, exploding throughout my mind — for 15 years.
I do not want to remember what it felt like. Talking about that part of the pain is too scary. To be reminded that this is what I used to deal with every day, every hour, and the constant pain, every second.
If I did not continue to have the eye movement and eye usage pain I would not be in any support group. But I still need support and to know I am not alone. I still need to feel I can be of help, help that comes from the part of me that still struggles with the pain and its consequences.
The problem I see with support groups is that people tend to see what is in front of them, but not what is missing. It is hard to see beyond the pain that each of us brings to the group. Often the succor and understanding we get from them we cannot find elsewhere. They are a wonderful resource.
But we miss a very important component and counterbalance when it is only us.
Once in a while we need to hear that hope, to have the firsthand report:
“I had pain. And now I don’t.”
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.