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Wednesday, September 14, 2011

What color pain?.

Today I read another post in a chronic pain support group about a family member not believing the person was in pain. It is too common a cry, "My (family, spouse, friends, colleagues) do not believe me. You don't look like you're in pain, they keep saying."

My father used to say to me "I don't know why you can't work. I have seen you read, so I know you can."

I repeatedly told him "I can read, it is not that I can't. It is that use of my eyes to read or for any other sustained use for more than 15 - 20 minutes causes severe pain so I have to stop. That is why I can't work."

How could I prove that I had the pain? How could I prove that the eye pain forced me to stop using my eyes?

I could not. Back pain, muscle pain, full body pain. How do you 'prove' that. Move a box one day and the next when you say "I can't." you are suspect. Hold down a job. Your pain cannot be so overwhelming then, can it?

For some reason I was reminded of when my father died. The Rabbi gave each of us a black armband to wear. We were to keep it on for a month. I was the only one to wear it the entire time.

I lived in NYC. When I walked through the jewelry district, home to many conservative and orthodox jews, I expected my mourning to be acknowledged, the armband the symbol that brought us together; for just a moment in time.

No one said a word, or lowered their head in acknowledgement. I wanted someone, anyone, to let me feel a part of something bigger, a community. It did not happen. On the 31st day I took it off and flung it into the trash.

We need to be a part of something bigger than ourselves. We need to have our pain acknowledged.

It is pink time again. People with cancer are embraced by the society, especially if it is breast cancer you have. It occurs to me that there is also a leftout if it is a cancer elsewhere in your body, or for that matter, if you are a man with breast cancer.

There is no color for pain. There are too many conditions that are the root cause of it. Fund research for say, lupus, and the pain of trigeminal neuralgia is left in the sand. Fund fibromyalgia studies and those with CRPS are out in the cold. Fund breast or lung cancer and there is a good chance the results can be used for those who have pancreatic or liver cancer.

Those of us in pain mourn the lives that pain has taken from us. The color black is already taken for all the other losses we have in life. Is there a color for us to appropriate? If we wore the ribbon on our collars would we stop hearing "I don't believe you are in pain."?


  1. Carol, have you ever hear of The Fibromyalgia Chronicles? It's for fibro pain, obviously, but the color code works for any kind of pain.

    Her name is Leah and I get her blog through my feed. I printed out the Fibro Crusade page and cut out the printed part and put it on the fridge. I want everyone in my family to NOTICE it. Since they can't see my pain, at least they can see exactly what fibro is and why I'm in pain some days and other days I'm fine and I might be in pain just from turning my head the wrong way. I never know what is going to trigger it and when it gets triggered, it takes days for it to calm down.

    Life with chronic pain is purple. And people with chronic pain are starting to wear amethyst jewelry as a symbol of chronic pain. I wear an amethyst butterfly as a symbol of cancer in general which is purple), the butterfly for a little girl we knew who died of leukemia at the age of three, and amethyst as the color of pain right before it goes to crisis level.

    Was it my comment that made you think of this?


  2. Chelle, Sorry it wasn;t. Something said in church on Sunday made me think of the black armband. I wanted to write about that and see where it took me.
    That sounds like a great idea, similar to the pain face chart (?)
    The only thing is for purple fro instance it is for pain then, which is great, but also for cancer so the 2 get kind of mishmashed, it could be construed as purple for cancer pain.
    I think also I was using the concept of a ribbon or color more as my frustration with pain being invisible, not only for those we deal on day to day but for the world at large. We are still pretty much invisible although less so than we used to be.
    Glad you were able to do your post here (: