Posted by Kathi (205.188.200.190) on September 07, 2000 at 18:32:21:
In Reply to: Doing a documentary for Discovery Channel, I would really like some advise posted by Bernadette on September 07, 2000 at 11:22:40:
Please tell them about the pain...the fear. The sleepless nights week after week. The look of fear on our children's faces. The look of exasperation from bosses and co-workers. All the holidays and birthdays we spend hiding...writhing in pain. The never ending frustration of trying to find a doctor who even knows what a cluster is. Then finding one, only to be told your insurance won't pay for the meds you need to keep from putting your head through a sliding glass door.
Tell them how we hide in shame, embarrassed by the drooling monsters we become during a cluster. The marraiges that break up and the jobs we lose.How we hide our condition from people as if it were a horrible addiction...because we've seen that "it's just a headache" look way too many times.
Sorry...I get very passionate about this. It's like having a disease that's just not glamourous enough to deserve any attention. I'm frustrated and scared and isolated. And I'm fed up.