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Wednesday, August 24, 2011

Why aren't you volunteering?

"Well, if you say you can't work at least you could volunteer somewhere!".

One of my sisters said this to me. It was a continuation of her disbelief about the level of pain/ if I really had pain. She said this after, I forget, number 3 - 6 of my brain surgeries, done to try and stop the pain. The irony is I got a job 6 weeks after the first surgery worked but never heard a "good for you." "Way to go." etc. (Or a 'sorry' when the pain came back 3 months later.)

I am reading an article from Psych central, an online site.*

The writer, a psychologist who does not have chronic pain, states: "If employment is not possible because of the level of disability, then volunteer work is suggested." What? Why would we be able to do the one when we cannot do the other?

She continues, "chronic pain can be managed. Management usually means that people live with some degree of pain." She is unaware that for many of us 'some degree of pain' is a gigantic and debilitating degree of pain.

If you believe that those with chronic pain can be 'managed' to allow only a modicum of pain then it follows that you believe we can do volunteer work as a substitute for a paid job.

Talk to many of us, that 'some degree of pain" means disability that is not just an inconvenience but a major impediment to living a life. For some of us management means being able to get out of bed in the morning or being able to put on our shoes

If we could do volunteer work we, most probably, can get a paid position.

I think, almost constantly, what can I do in the context of my pain; and if not a paid job then maybe I can do a volunteer one?, but the reason I cannot volunteer is the same as the reason why I cannot get a paid job. I have pain that is disabling.

My father once said to me "I have seen you read, so I know you can read." I explained to him, repeatedly, that I can read, and write, but only for 15 - 20 minutes before the pain becomes so bad it nauseates me. He does not want to hear or believe it. This is, I think, somewhat the author's reasoning.

"Medications are one option,", she writes, "but it is a common misconception that medications cure chronic pain" I do not know who has this misconception, it is not those of us with CIP (chronic intractable pain).

"Most medications for pain dull uncomfortable sensations..."

We look, hope, and dream of a cure; but we also know that the medications we receive, often opiates, may 'dull' the pain - if we are lucky. They also make us feel awful, cloudy of thought, tired, and slowed in thought and movement: neither fun nor sensations to be wished. And how do you work when you feel like this, even forgetting the addition of the pain?

And, I am sorry, but to equate "uncomfortable sensations" to chronic intractable pain is a gigantic miscomprehension of what CIP is, as opposed to the pain of say a sprained wrist or a slight arthritis (as opposed to severe and disabling) of a finger or toe.

Only someone who does not have pain, like the sister, my father, or the article's author, can think this way.




  1. I live each day in chronic pain. I have volunteered and can tell you the problems with that. As a volunteer, I have had people say, "you are in great shape. do you run?" I laugh and reply, "Sure, I run to the shower and run to the car." Thanks to good genetics my fat hangs well. However others perceive this as athletic. Other women wonder how I stay so thin. To this I reply, "Well, if you get hit with a 2 by 4 on your back, you will stay thin too. Although I don't recommend this." As you can see, people's eyes fail in sending them a false message of the real events. I can tell you that in volunteering, others who maybe struggle with their weight as their big problem, and perhaps envy my thin waiste have no idea how much I suffer in pain and that is the real reason I am thin, because I am too this to even have an appetite for those cookies. I understand, Carol's topic of if I could, but I'm saying that even for those twenty minutes she could, if she tried, others would condemn her because she must be as healthy as them, and therefore they are envious of her ability, whichever they might be. Others, including doctors often are fooled by their eyes and envy you for what little you might be able to do that they can't and condemn you for what you cannot. They don't see what you cannot as impossible, but instead as a choice.

  2. That is right on the nose Reveriefrance, They see it as choice, because then they do not have to believe or accept your pain.