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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Monday, February 25, 2013

THE CAUTIONARY TALE. It doesn't work for us.

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?


  1. You are right on the money! There are people in my church who get the glazed eye look if I mention anything about "pain". Heaven forbid that I get asked "how are you doing with your pain"? Pain Pump surgery, etc... and you would think it's TB! :) Wonder why chronic pain is such a taboo conversation, even with family? As you said, it's hard to comprehend. But, wouldn't it be nice to TRY to comprehend? Lucky is the pained person who has that situation!

  2. I agree with you. I like to think it is because they are afraid of the subject, if it could happen to (you) it could happen to me. It's one thing to think about something many people deal with, no matter how bad the possible treatments, but they also come through it usually. I would bet not a lot of people know personally many 'cardiac cripples' for instance.
    I hadn't thght of it but I wonder if we were diabetic if it would be more or less the same. we know you have it now don;t talk to me about it anymore. Do what you need to but don't make me have to think about your daily struggle.
    Not sure if that works or not but may be analogous.

  3. your entry has me in tears. have been and still am in the same situation as you. it is so lonely and isolating to live a life in chronic pain. no one, even when they ask, really wants to hear about it.

    i feel like a leper at work and even at home with my husband and sons. had the same experience as you had with my extended family. finally just divorced them as i know they will never get.

    as we say on one of my online support groups, "we get it because we got it". only we who live the life really understand.

    thanks for sharing this, my dear :)