Posted by Todd (126.96.36.199) on January 13, 2000 at 17:34:09:
I've been reading all the recent posts and thinking about some of the comments made with regard to the various "Stupid things people say" threads.
I believe that we (individually) have a much greater affect on what others say and how they react than we may wish to admit/recognize.
I have no relatives with clusters, migraines or any other form of recurring, serious head attack. No brothers, sisters, parents, uncles, etc. Only one person (a friend of my parents) has ever said anything like "Oh, yes. My cousin's stepbrother's sister in law's best friend has that."
Clusters have affected me at 3 different jobs as well as while owning my own business. It's impossible to 'hide' them from co-workers, subordinates and superiors, and so I've explained them to a fair number of people. Two of these jobs entailed full time travel (5 days and nights on the road, every week), necessitating at least an entire day off just to visit the doc (assuming I could wangle and hang on until a Monday or Friday appointment). Never a problem. Sure, I"ve pulled lots of late nights making up for the work I couldn't do during normal hours and lots of weekends catching up for missed days, but most of that was my choice, stemming from my personal work ethic.
My mom saw her first cluster this past June. I've had them for 17 years. She never once doubted that they were real, although I don't think she understood (fully) the severity until she witnessed one. A week later, after she returned home, I received a package containing two boxes of Migraine Ice, and a note from her saying she hoped they would help. Sure, I had the typical 'what they heck can these wimpy things do for a CLUSTER' knee-jerk reaction, but that passed as soon as I reminded myself that people here have posted that they sometimes help.
So, what's my point? Well, let's start with what I'm NOT saying.
I'm not Henry Kissinger.
I failed the Dale Carnegie course.
I'm no smarter or more charismatic than anyone here and likely much less so than many.
I've also never had a supporter in my entire cluster-life. (Prior to ch.com, that is)
So what have I done to get what appears to be such a different reaction than many?
Well, I'm not really sure. Just thought I'd post this in case I accidently say something that might help someone.
What I do is this:
Explain my disorder as calmly and thoroughly as I can.
This includes things such as my overall exhaustion due to lack of sleep during a cycle.
Answer every question to the best of my knowledge, even though the answer to most of them is 'No-one knows'.
Thank co-workers who 'pick up my slack' while I'm under attack and make sure I return the favor when they have, say, a grandchild's school play they want to attend mid-day.
Tell everyone who NEEDS to know, and no-one who doesn't. I don't hide my disorder, I just don't broadcast it.
When someone mis-understands and says "Oh yeah, my wife gets migraines", I explain the difference without belittling the agony that person goes through.
Finally, for those people who just 'don't get it', I drop it. Much as I would like for the world to know about and understand clusters, I gave up tilting at windmills in a former life. To shamelessly paraphrase, You can teach some of the people all things,
and all of the people some things,
but you can't teach all of the people all things.
I got into my state of rightious indignation today when I read a 1/2 page spread in USA Today about Chronic Fatique Syndrome, which is estimated to affect 500,000 to 800,000 Americans. Very analogous to CH, in that it was originally considered to affect white women almost exclusively (Not True) and sufferers deal with a lot of 'Oh, (s)he's just lazy' kind of things. No known cause, little effective therapy. Sufferers can't work, attend school, take care of their families effectively, etc. No celebrity spokesperson or telethons. Think about the amount of eye-opening publicity that article in the most widely-read newspaper in the US generated. This afternoon, there were foundations all over the country and possibly the world talking about setting up grants to find the 'cure' for CFS. And researchers sharpening their pencils and starting to write grant requests. There's another big splash in lots of papers for the doc who figures it out now.
I loved Christine's post about the Top Ten ways to 'cure' a cluster. Even contributed my own little piece. I'm a HUGH believer in the value of laughter in dealing with the emotional aspects of clusters (or any other serious medical condition).
But it's important that we keep such threads in perspective and contain such comments to our little forum. Treat 'civilians' with respect and education and perhaps, just perhaps, one day you'll see a 54pt headline in USA Today saying 'Cluster Headaches HURT!'
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