I have been noticing a growing trend lately among CFS & Fibromyalgia communities where discontent and drama are becoming as regular as if I were watching a soap opera on television. What is happening to our once united community that stood together because we had the one thing in common that no one else in the outside world can possibly understand?
It really saddens my heart to see that what little energy there is to be spared among those of some with CFS & Fibromyalgia is being spent criticizing, judging, bullying and belittling the attempts of the ones who are putting our lives out here to help the chronic illness community.
I wasn’t going to post anything about what has been going on with my own experience but I recently read about someone else online who has been working extremely hard for the Fibromyalgia community, putting her own time, money and efforts into the cause and she is being bullied like crazy. She’s not being bullied by just anyone, however. She is being bullied and harrassed by people who are coming to her site daily for help and guidance with their illnesse, yet sending her messages harrassing her about how she is running her site, and because she sells items on her website that are related to her cause.
I have been going through the same thing by people who are accusing me of spam because I post about the Fighting Fatigue Fighting Back Challenge, which is the website where I am trying to create a huge national awareness campaign for Fibro, CFS & other chronic illnesses. The campaign is to have people submit their stories, poems, and art work, etc. of how they are surviving and thriving with chronic illness.
THIS IS A GOOD THING – IT IS A POWERFUL THING. I AM NOT MAKING MONEY OFF OF THIS, BUT I AM BEING SENT NASTY MESSAGES AND BEING ACCUSED OF BEING A SPAMMER AND BEING CALLED AWFUL THINGS BY THE CFS & FIBROMYALGIA COMMUNITY BECAUSE I AM TRYING TO GET THIS MESSAGE OUT THERE.
Here’s the big problem that I have. People look to sites like mine and the one I mentioned above for help, but as soon as they see something that resembles even the smallest bit of marketing or publicity, they assume that we are some kind of scammer or just doing this to make money.
Any of us who run sites like this put far more of our own money into these sites than what we ever make back out of them because our goal is not to get rich – our goal is to help people. For some people, they need to try and make a little income from their sites and there is nothing wrong with that. They are providing a service, after all, so get over it.
I went into this Fighting Back Challenge with my hopes extremely high and with such high expectations and I refuse to let a few jerks out there who would rather wallow in their own self-pity than try to help make a difference ruin my campaign and ruin the message of what Fighting Fatigue and I stand for.
For those who are bitter and angry about their illnesses – you are directing your anger toward the wrong people. We are the ones who are trying to help. We are the ones who have not turned our backs on you, remember that.