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.
The only time I've ever kicked someone out of a dialogue is when they are clearly a spammer. Those spammers are the worst. (And totally incoherent, so they're not hard to spot... actually, I think they are computer programs.) But otherwise, sharing information is an important aspect of online support. It's the first thing many women are seeking before they find themselves a online community.
ReplyDeleteYes, spammers and google is starting to let some of the spam comments through on this blog! They are old posts so I can usually eliminate them.
DeleteAnd you are right. Information is what makes people reach for an online community so to bar info seems silly but as Karen (below) said.. Maria has graciously moved on. I need to learn that GRACE stuff.
Hugs,
AM
I was in a user support group for the rare disease I have. I don't know if they were gathering info. for a book or not...but I was KICKED OUT TOO. NO warning, no nothing. No "warning". No explanation. It's just sickening. I have had to make my way alone in regards to finding support for me for my rare disease. This is just wrong on so many levels.
ReplyDeleteHeather,
DeleteI am so sorry you experienced this, too. I will never understand how anyone can turn their back on another person. EVER.
xoxo
ARE YOU KIDDING ME!!!!! I know that site, UGH they have used my blog posts
ReplyDeleteSee...
DeleteHere's where the "crazy Italian stuff" comes out. We react the same way. When it's NOT right, we get fired up. Hence, the red background. I'm glad Maria is calm.
HUGS from snow hell...
AM
It is a disgrace and should not have happened. I would be very UPSET if someone was using my words, pain and fear for their own personal financial gain!
ReplyDeleteLexie,
DeleteSee that's the part that bothers me. Using the experiences of others as a basis for any kind of book really gets under my skin. It could be a hot button because I was prey to that many years ago. It was a support group for moms and one of "us" took all of the info and turned it into a "how to parent a child with......" and it PISSED ME OFF!
xoxo
dear anne marie,
ReplyDeletethank you for posting about maria's plight. on a positive note it appears she's moving on and i'm sure will find a much more fulfilling and focused effort to help others with metaplastic breast cancer. hopefully, the issue of ethical behavior of those involved will be scrutinized more closely. running amok for personal gain in any setting is so WRONG, but in the arena of cancer, is plain and simply reprehensible. and no, i had never heard about MpBC.
i hope all is well with you and your mom (hi, mary ann!).
much love, XOXO
karen, TC
Karen...
DeleteHuge hugs to you from me and from my mom, too! I'm glad that Maria has moved forward with such grace. All of this was happening last night in real time, so I was getting REAL worked up!
Much love to you and Hugh, too!
AnneMarie
xoxox
Ann Marie, I heard about this disturbing occurrence too and I felt badly for Maria. It's one thing for someone to be gathering stuff for a book if he/she is upfront about it, but not telling people, in the group he/she is garnering info from for this purpose, well, that's another matter. And regardless, throwing someone out who's simply trying to add to the discussion makes no sense at all.
ReplyDeleteOh, AnneMarie...I haven't yet read Maria's post, but I'm very sorry to hear that BCO is still up to these kinds of shenanigans. I could say a whole lot on this subject, but will restrain myself. I will only say that this is why I haven't visited BCO for a long time now. I managed to meet and make some lasting friends on BCO, and they helped me keep my sanity during my darkest hours. But the hysteria, intolerance & very skewed judgment on the part of the admins that I encountered all too often just turned me -- and many others -- right off. I witnessed some serious witch hunts that were just intolerable. Fortunately for me, the good friends I met travelled to other social media and I am still in touch with them. Those who really care about Maria will no doubt continue to reach out to her as well. Hugs. Kathi
ReplyDelete