A Pained Life: When Support Hurts

By Carol Levy, Columnist

Last week there was a meeting of my local trigeminal neuralgia support group. I like the people and want to see them, especially because we meet only 6 times a year, including one lovely summer picnic at a member's home.

It takes me an hour by train to get to the meeting. Lately, I find myself using that as an excuse not to go.

The truth is I don't want to go because of an issue that seems to haunt most support groups: the people who have gotten better or cured, leave. So we never hear the stories of success.

When my pain was bad I needed to hear those stories. Now that my pain is better, I do not want to listen to the reminder of what once was.

I had a spontaneous remission of a large part of my pain, the part most typical of trigeminal neuralgia: touch induced and spontaneous pain (and in my case constant too). I still remain with eye movement and eye usage pain, which are very uncommon with trigeminal neuralgia.

I have become an outsider to the group in the sense that I "only" have the eye pain -- yet I remain an insider because it is still trigeminal neuralgia.

I think about what I would do if I no longer had any pain.  Would I continue to be a part of the group? Would I want to be somewhere, when the only point would be to be reminded of how bad my pain was?

I think of people who lose a lot of weight. You read two kinds of stories: “I threw away all my plus sized clothes so I will not be reminded or tempted to go back to my former size.”

Or the antithesis: “I keep all my large sized clothes as a reminder so I won't go back to those days when I was so unhappy and physically miserable.”

Of course pain is different. Once it is gone, it's gone.  And when it's gone I want it to be completely, totally done, gone, and finished. Attending the support group becomes only a reminder of how devastating and debilitating the pain was.

The eye pain keeps me disabled, but the ending of the other parts of the pain has made my life more manageable.

I no longer fear the slightest touch to my face, even a wisp of hair, much less a raindrop or something touching the affected area of my face. To listen to members of the support group describing the pain they get from the slightest of touch is to take me back to a very dark and torturous place, a place I do not want to go.

It's a conundrum.

Support is so very important, not only to be there for one another, but to be with those who truly understand, who have been in my shoes and I in theirs.

The sharing of hope, to say to the group, “A major part of my pain is gone. It can happen”.  The proof that hope is not just a fairy tale matters. A lot.

But, as much as I hate to admit it and I feel very guilty about it -- I am still too selfish and fearful to be the one to carry the message.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.