Her name is Maria and she is a friend via twitter. She has metaplastic breast cancer. It's RARE. Have you ever heard of that particular form of breast cancer? I didn't.
She belonged to an online support group. I say "belonged" because she was **thrown out** of the group. Rather than telling someone else's story, I'm going to direct you to her blog where she explains what happened.
Apparently, the "founder" of the group was using the "experiences" of the group as the basis for a book......This, unbeknownst to the members who were in the group for support. Not for book fodder. Maria connected with a researcher and she hoped to bring this to the group. That was months ago. She was ignored by the administrator but remained involved in the group.
Then.... never mind.... you must read what happened directly from Maria's blog.
Her post is titled Don't Rain On My Parade.
It doesn't take much to get me fired up but THIS really sent me into orbit.
As of last night, Maria learned she was somehow blocked from the support boards at BreastCancer.Org. THIS is a pretty big deal. The support boards on that site have tons of traffic and I know there are times they can get a bit contentious but STILL. Who gets to decide who is in and who gets kicked out? I'd like an answer to that question and as soon as I can get a bit more detail, I will get to the bottom of this. Sounds a little like a queen bee got a bunch of wanna bees to kick someone else around. I hope to get an acceptable explanation. Like, it was a mistake... Barring that? I will have plenty more to say but I'm going to refrain for the moment.
Meantime, what's your take? If you were in a closed Facebook group and did NOT know the intent of the administrator was to use the information gleaned from the "support" to pen a book, would this be acceptable? I know it would not be acceptable to me. It's dirty. It's cheating. It's using others for your own personal gain. It's sneaky. It betrays others. It's exploitive.
Really, it's a disgrace. Proving what was told to me by someone very wise and someone very special to me. "Just because a person gets cancer, it doesn't automatically make them a nice person. If they were a bastard before their diagnosis, they most likely are still going to be a bastard."
This is a clear case of precisely that. And with that, I rest my case.