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I have lived with chronic pain for over 40 years and thought I had dealt with my feelings associated with how people responded to me, my pain, and the various situations my pain has either put me in or prevented me from being in. For instance, as a child there were many times that I could not do the physical things my siblings and friends were doing so they thought I was a wimp, or maybe I was just home from the hospital or was in a cast for a while and they’d think I was looking for attention, or just trying to get out of doing chores. I knew that deep down they didn’t really think I’d do to that extreme just to get out of washing the dishes, but it was hard for me to understand why I had all this pain, why wouldn’t it be hard for them?
Of course the doctors didn’t help much, either. I am an advocate for greater education about pain and pain management for all medical professionals, especially doctors of all specialties, because currently there is not enough about how pain works in our bodies and the impact it has on our lives, nor do general practitioners or specialists learn the best ways to treat various kinds of pain. If this is true today, and it is, imagine what doctors understood about the whole pain cycle and its management 30 or 40 years ago. At one point in my early teens I honestly thought that what the doctor was telling me was that if he couldn’t fix it surgically, then I didn’t have a problem. Who knows, maybe that was what he was telling me because the following year he operated. And I needed four more surgeries after that, including a spinal fusion, but I still have the pain.
So I thought I had heard it all and that hearing, “But you look so good, you can’t be in pain,” a few more times wouldn’t bother me at all. And if I heard it once or twice when I went out for an evening it probably wouldn’t bother me. But picture this: I went to a family party last weekend and after being there about ten minutes I asked my daughter, the only one there who I knew would get what I was saying, if there was a contest I wasn’t aware of.
“Did someone start a lottery to bet on which person was going to be the 100th person to tell me I couldn’t be in pain or my MS must be in remission? Or perhaps which person would be the one who would finally get me to snap and start running around like a lunatic?”
She laughed with me, but agreed that even she could see the patronizing, large smiling people coming up to me as though I had just buried my best friend, taking my hand and insisting I look great. Or saying something like, “I am so glad you aren’t in any pain tonight, you couldn’t be and look like that now, could you?”
It was a lovely party of about 100 family and friends, and while there were tables and chairs to sit and eat, as typical with my family everyone was standing around talking and after a while people started dancing. I have always loved to dance and miss it a lot so I danced my version of a fast dance, which is to stand in one place with my two forearm crutches and move around to the music a little, which I knew was going to put away any doubts a person might have about me not having any pain.
