A member of the church came forward this past Sunday to speak about coronary artery disease and his experience with it. He told his story to remind people about the necessity of not ignoring signs and symptoms. His experience was a bad one (he came out of it doing well by all accounts, thankfully) and his point very well taken.
I was envious as I listened to him. Not of what he went through. Never. But of his coming forward.
I visualized myself, or someone else, with chronic pain doing the same thing. That did not work.
It is not a universal experience, in terms of having a cardiac problem or history. Almost everyone knows someone who does or did, or knows someone who knows someone.
I could not come forward and say, this was my experience and please heed it as a cautionary tale.
Saying "It is estimated that 116 million people live with chronic pain." is more or less meaningless. The concept of 'chronic" pain is foreign to most people. Acute pain everyone knows, and 'gets'. Weeks, then months, then years of pain. That does not make much sense. Pain is solvable. Your sprained ankle goes away, the broken arm mends, the appendix is removed. If it is a disease, the disease is treated, even if it is a chronic one. You may have to deal with the disease, take insulin, or undergo longterm treatments, but that is different then "just" having pain.
I sit through choir rehearsal or the church service. This is very painful for me: the use of my eyes to read, the bright light of the room or the sun shining in the sanctuary, looking up and down as we walk down the aisle singing. There is no one to whom I can turn and say "I am in so much pain."
Even if there was what can they do? Maybe a pat on the hand or an "I know. I'm sorry." or "I wish I could help." That would be nice. Honestly it would feel good to have an empathetic "I get it." How frustrating that might be though. To say the words but being impotent to do anything.
I am a 'doer'. It may be my projection, the inability to actively help being so passive as to make words feel worthless. Of course, they are not. I would love to have those words said to me. When they have been I feel an overwhelming sense of relief: "I am heard." Another day when I mention the pain, I get an opposite response and learn, anew, that an understanding of it does not mean 'I want to know about it."
If I say "I had heart disease. This is how it happened, this is what happened to me, and this is what you need to be on the watch for." people listen. After all, it could happen to them. If I say "I have chronic pain. This is why and how it happened." I cannot follow up with "and this is what you need to look for in yourself." And it is that last part that makes all the difference.
What do you think?