Posted by Dave Emond on October 25, 2001 at 01:46:28:
In Reply to: First Time Here... Long Time Sufferer posted by Chris on October 24, 2001 at 23:13:57:
Welcome to both of you to this site.
I think it is very important to make as many people aware of CH as possible. This is one of our main problems, Cluster Headaches are not understood and do not get the attention it desperately needs.
Without educating the public, employers, friends, pharmaceutical companies, doctors and insurance companies we will continue to be misunderstood and ignored.
O.U.C.H. (The Organization for Understanding Cluster Headaches)is trying hard to bring this rare disorder to worldwide attention.
Worrying about judgements should be a concern if you don't explain exactly what it is you suffer from. I'd personally be more worried of judgements made from lack of understanding.
We have a form for employers of CH employees, that explains your condition and urges communication between employer and employee to ensure job security. (Contact me if you would like a copy.) We can help you in many ways to explain CH to others. If we remain silent, so will the medical world.
Tired of hearing, "Oh ... I've had bad headaches too"? Or, "What is wrong with you, can't handle a headache?" And many more ignorant assumptions made by those who don't understand. They NEED to understand.
Any help you need in expressing yourself, please feel free to ask for help here, that's what this place is for, to support each other. And eventually make the term Cluster Headaches as recognizable as other rare disorders were just a few years ago. The world needs to know we do not have migraines or tension type headaches that we can't deal with, but a truly different disorder that can be extremely dibilitating.
No need for embarrassment, our brains are normal, and CH sufferers are probably the strongest people on this planet. Anyone who can survive this disorder from 1 week to 30+ years should be considered the toughest people in mind, spirit, and attitude around.
Let's educate the world, it is afterall up to us if we ever hope to find a cure.
Best of luck, and please hang around and tell us about your experiences,
My best to you,
Dave