I had a conversation, years ago, with someone about a friend of theirs who had gone through 13 operations for cancer. "!3!" I said, amazed. "How can anyone go through all that. I can't imagine."
My friend looked at me increduously. "You have had 12 brain surgeries for the pain." I shook my head. "No. that's not the same. Not the same at all. Your poor friend had cancer."
Is it the same: 12 operations to try and solve my pain, 13 to remove cancer? No. I did not see it. I 'only' have pain. She had cancer. Cancer can kill, pain can only...well..., kill me, even if it is only in the spiritual and life changing, altering, closing off of alternatives, choices, and abilities kind of way.
People know cancer. Chronic pain is, for the most part, unknown. And misunderstood/not understood.
I have a tiny basal cell skin cancer. Caught quickly, it is as close to nothing as anything associated with the word cancer can be. I hurt my thumb, it goes away. Both nothing much in the scheme of things.
I hurt my thumb. It sets off a bodywide pain that does not go away, that gets worse, that can keep me bedridden. This is RSD (CRPS). I get a chasm making, face splitting pain that lasts for only a few seconds. Within 2 weeks it disables me, coming on its own, triggered by any touch, and accompanied by a constant choking murderous pain. It is trigeminal neuralgia. I am diagnosed with an organ, blood, or bone cancer. It may be killing me, literally.
The word goes out for the latter. Jane has cancer. Family comes together, neighbors, local church groups offer to make meals, help take care of you. You are embraced. The cancer community, through wellness centers and other support groups, is there for you.
Jane has constant intractable pain. The word does not go out. Family, friends, neighbors, get tired of Jane refusing to go places. "She says she can't, she has pain." It is tiresome.
A number of years ago I was at lunch with my mother and sister, Sue (pseudonym). There was a decorative lit candle in the middle of the table. The movement and glow of the flame was excruciating to my eye. Nevertheless I was afraid to blow it out, afraid of the response I would get. The pain decided for me. "I need to blow that out." I said. As I did Sue gave me a look, a 'geesh' body gesture. "The light and flickering hurts my eye." "It's perfectly fine and looks nice. I'm going to have the waitress re light it." "Please don't do that" I said. "You just want to make a fuss and get attention." The waitress was summoned and lit the candle again as requested. A few minutes later Sue excused herself from the table. Immediately I blew out the light again. (My mother was quiet throughout not wanting to get involved.) The minute my sister came back to the table she looked at the candle and waved the waitress over again. For once I stood my ground, the pain taking the lead. "Thank you but we do not want to have that relit. In fact, wy don't you remove it from the table?" My sister fumed, the conversation stilted, the atmosphere blackened. What had I done wrong? Nothing. I merely asked that my pain be respected and honored.
My other sister developed cancer. (I was not notified until she was nearing the end of the disease.) Friends took care of her, my brother made sure I knew she stayed at his home while she underwent chemotherapy. The family embraced her.
I was denied, my pain ignored and disbelieved, 12 brain surgeries looked at as 'she must have talked them into it'. June's (pseudonym) cancer was accepted, her needs met as soon and as often as possible.
I was hurt by all this but that is not the point of this post. (It had started out in a different direction but as often happens, somehow it went in a completely new direction.) The difference is: cancer is believed. We hear about it all the time. I think most of us also fear it, and rightfully so. It is a clarion call.
Pain goes away. That is what most of us know from our own experience with it. A pain that continues, and continues, and continues still. It is also a taker of life, in a different way, and people also fear that. Cancer is real. We cannot turn our heads away or bury them in the sand.
We need to do that when it comes to pain. How can one live, exist, if the pain never goes away, when our bodies become the torturer? The only way to ignore that question is to pretend chronic intractable pain does not exist, that we who have it are poseurs, malingerers, liars.
The time has come. We raise money for cancer, all cancer, because at the end of the day cancer is cancer. We also raise money and awareness for pain but mostly for one pain disorder at a time. Arthritis, Lupus, MS, RSD even, now that that is becoming more accepted as a 'real' disease: they each have their own fundraisers. That cannot be done with chronic pain as a whole because each entity is a completely different disorder. None of it comes under one umbrella, except the one called chronic intractable pain. .
Please, do not ignore us or dismiss us. You would not do it if I had cancer. Pain is every bit just as real.