Posted by Jackie on August 17, 1998 at 00:21:04:
In Reply to: Your opinion please. posted by Jackie M. on August 16, 1998 at 19:59:12:
I've had episodic clusters since I was 14. I'm
51 now, so I've been dealing with this for most
of my life. I've gone through so many feelings regarding
these headaches: feeling weird, ashamed, misunderstood;
feeling like I must really be psychologically
unbalanced. Then, about 8 years ago, I made a
decision. I would take a totally different approach.
Instead of trying to hide this medical condition,
I came totally out of the closet. I Xeroxed the
passage is Dr. Lee Kedrow's book on cluster
headache that describes what happens during the
headache. When I started an episode, I brought
the Xerox into work and gave it to my supervisor.
Instead of acting defensive about it, I said to
him, "I have this real weird medical condition.
This passage describes what's it's like. I'm
going out on disability. See you in 1 month.
Previously, I'd toughed it out, still going to
work, looking like hell and feeling like hell.
I realize this disability option is not viable
for everyone, but I knew it was for me. So, ever
since then, that's been my approach at work and
in general.
I'm very grateful for this group. There's nothing
like talking to people who understand. Not only
that: we're actually getting very valuable informa-
tion about treatment options that even our doctors
don't seem to know about.
Jackie