I need to have a gripe session. I promise to keep it brief, and I truly hope not to offend ANYONE, but please remember these are my current thoughts due to my situation and this is the only place I have to vent them.......having said that........
Do you ever wish you had been diagnosed with something else? Anything else? If I had been diagnosed with another disease that was well heard of and well understood, I don't believe for a moment that my family would still expect me to work full-time, take care of them, listen to their problems, and pretend like nothing is going on. Wouldn't they call to see how I'm doing, wouldn't they bring over meals, wouldn't they support every decision I found I had to make for my health?
But for some reason with CFIDS, they choose to keep their head in the sand, to make no effort to UNDERSTAND, to ignore what is so obvious in front of them. In some cases, they choose to simply not believe or to pretend that certaintly I will bounce back any day now.
They expect me to hold off on cutting back hours until this goal has been met, until this has been sorted, until THEY are ready. They get upset when I have to tell them - no I can not help you with X or be there on this day, or even listen to you whine on the phone for an hour about your problems, but yet NEVER ask how I am.
Fortunately, fibro is a bit more understood now (I'm certain due to a particular drug that is being marketed for it, but still at least it's being accepted), but with CFIDS there is no drug, there is no advertising, there is just alot of disbelief. In fact, I have a family member, who has a friend with Fibro, she will call ME to complain about something because she doesn't want to bother her friend who is suffering so greatly with Fibro - (anyone else shaking their head?).
I just want to be treated equally, I want to be understood, I am sure I am expecting too much.