I've been on both sides of the tracks.

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Posted by Joy ( on March 26, 2000 at 13:22:03:

In Reply to: My Story! posted by Elaine on March 26, 2000 at 10:09:04:

Elaine, I'm very glad that your experience with CH has been that they didn't keep you from living life. You're blessed that you found a way to keep that from happening. I know there are a lot of people who don't have the ability or means to live that way.
I know these things hit people different ways. I know that some people find a way to take control of them--I'm one of those people. But I also know a lot of people who are chronic (I am also one of those people) with these and have tried all they can do and still cannot control the monster. They can barely function. I don't think it has anything to do with self-pity, not wanting it bad enough or anything else. There are just people who are much worse off than we are.
I've been there. I know what it's like to have people shove opinions and suggestions down your throat and when they don't work for you, the people who mean well assume it's a weakness in you that keeps you from being able to take control. That's not it at all. For 15 years I had well-meaning people give me unsolicited advice. I grew so weary of people trying to tell me how I should handle my headaches, that I should just toughen up, or quit being such a baby, and various other "tough love" tactics with good intentions. They never helped, they only made me feel even more guilty because I couldn't control the headaches and live the normal life that I wanted to live MUCH more than the other person wanted me to.
I have a high pain threshold, a very joyful disposition, and took 15 years to find something that worked for me but I didn't give up. And I never forget where I came from. I understand the person who has these so badly they can't keep a job. Just because I overcame it doesn't mean I have any less compassion on those who can't. I don't have their headaches and they don't have mine. Sometimes, though it's frightening for a lot of us to admit it, these things are so horrific, so relentless and so overwhelming and consuming, that some people are in bondage to them. And although we intelligent, intellectual, take-charge types (which a lot of us CH sufferers seem to be) like to have everything under control, there are still people who are imprisoned by this ailment. The best we can do for them, especially if we are freed from the prison of pain, is encourage them, support them and continue to hope for a cure. Because until all of us CH sufferers are cured, all of us are subject to being in that prison at one time or another.

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