Friday, May 4, 2012

the masto soap opera continues

sometimes I think Facebook is like, the worst fucking thing to happen to masto patients. in the past couple weeks the drama that has been pervasive all over the site is seriously like watching a community theater version of Game of Thrones. It's fucking ridiculous. Gossip, malingering, all sorts of accusations, threats, blackmail, exclusion of patients, pretty much if it's shady and harmful, it's happened. I know I don't know all the details, and to be honest i don't want to. unless some poses a real and valid threat to other masto patients, something that can be backed up with solid evidence and not conjecture, i don't care. it's not my place to judge.

 I was part of a group that was oriented around Holistic medicine. I'm a firm believer in Holistic treatment. I've found that I've been able to control my disease fairly well through following a low histamine diet, through low/no processed sugar, low/no gluten, coupled with exercise to protect my spine since I have osteoporosis as well as to just condition my body overall. While I am also a huge fan of science-proven medication, as without it i'd be screwed, i do think that we are more than our diagnosis and to treat ourselves the most effectively we have to look at the whole picture. we need to figure out how to change our diets and get rid of the superfluous stuff that might sap our energy to digest, we have to figure out if we can exercise and what the best exercises for us are so we can protect our bodies if we have osteo so we can maybe ward off going on really strong bone drugs for a while, we need to figure out what the best diet is to protect our bodies from the side effects of our medication, the list of reasons why we should all (masto or not) be aiming for a holistic approach to our healthcare is endless.

 So we had this awesome support group of 100+ people, and I guess some shady stuff happened between two members. (there are also accusations of malingering, but at this point i've run into so many attention whores and fakers that i just ignore them because it's not worth the mental or emotional energy to try to "out" them. if they're legitimately faking it, everyone will see through it soon enough and obviously their lives are pretty sad and empty if they need to fake having this awful disease) I don't know them, so what went on between them shouldn't be my business, but their business seemed to become everyone's business and it even eclipsed the potential malingering element.

To be blunt, I really don't care what strangers do with their free time. If I need my dose of voyeurism, i'll go check TMZ or Perez Hilton or read People magazine or something. So two people went and did something that, depending on your moral convictions, ranged from stupid to scandalous to sinful. The moderators alluded that something terrible had happened (though it seemed, at least from my perspective that the majority of us did not care a lick about what they were alluding to) and then suddenly private conversations were made public, personal photos were made public and emailed all over the place, conversations showing people cursing each other out was made public, names were sullied, again it felt like real Game of Thrones style drama (as an aside, Game of Thrones is awesome, masto-facebook drama, not so much) and out of nowhere everyone was kicked and the group was shut down. all the documents we created, gone. i was kindly given some by one of the moderators but i'm not sure if it's all of them. but again, to lose that collaboration, for other people to lose access to those documents, it's painful. it's literally physically and emotionally painful for people. months of posts, months of discussion, just all gone. it's like someone died. the loss is really that deep and that painful for many people involved.

 A couple days later people started getting rejection emails from 10 newly appointed moderators. Apparently quite a few people were getting these rejection letters. I was told that the main moderators had decided to reform the group and appointed ten moderators and decided to cap the group off at 50 members. 10 moderators and 50 members. That's sort of a crazy imbalance to start off with. The other new "rule" was that all new members had to be unanimously be voted on by the ten moderators and if you were rejected you couldn't be told how or why or by who. The replacement to our awesome, inclusive, holistic group is the antithesis of everything it once was. The group that myself, and other people were rejected from is very clearly not the group we thought we were asking to join. i don't like private groups, i think they are breeding grounds for cliquishness, gossip, and groupthink. not my scene at all.

So now it feels like we're now back in grade school and it's all about popularity contests and somehow we can now justify the concept of deciding who is or isn't good or nice or pretty or funny or popular or 'nice' or interesting enough to be a part of a support group. for a super rare disease with no cure in sight. there are so few of us i just don't see how this division can go on and be healthy.

 Look, I get that people want to have small fb groups where they can keep tabs on their friends. it makes sense to have a group of 5-10 people where you all know each others addresses or phone numbers, where you can talk about really intimate life stuff like deep seated emotional feelings or relationship stuff or whatever...but that's more of a personal support group. that is not ever what the holistic group started out as. it was over 100 people, everyone didn't know each other, and it was a beautiful thing save for the drama of a couple people. for the life of me i don't see why those people weren't removed and then just have the group go on as it would've.

i mean, the TMS page sometimes erupts into MASSIVE drama, but it all dies down within hours and everyone goes back to supporting each other. while i know that i've had my share of not so nice thing to say about the TMS from time to time, i totally respect and admire that they try to treat everyone as equals, regardless of their personal feelings. and really, considering how astoundingly dramatic the masto community manages to be, that's no small feat. but what upsets me, is when you set up a support group on either an element of the disease or a treatment modality, you have to give up some of the control of that group, it no longer belongs to one or two people, it belongs to everyone. like, i don't consdier the support group that i started as 'mine'. it's not, it belongs to all the members equally. i cannot think of any reason that ANYONE should ever have for denying someone access to information or support other than like, threats of physical or emotional violence. Otherwise there is simply no justification for it. as it stands, i find it heartbreaking on a real personal level that the moderators  abandoned over 100 people by deleting the group with no warning, without proving the option to pass moderation on to new people. regardless of the pain the moderators were feeling, by starting and maintaining a group of that size, you end up being on some level responsible for them...and you might not like everything that is going on, but there are still 100+ people depending on you to look out for them, even if that means making painful decisions that benefit everyone, not just a select few.

 i understand that they were upset about the drama that was going on, but it seems like it really consisted of two people doing something dumb, a few people running with that gossip, but i just don't see how that's worth making a move that ended up denying over a hundred people an awesome, unique, and irreplaceable support structure. i just don't. maybe i'm being bitchy but i don't like being made to pay for the actions of other people. i don't like seeing other people get thrown under the bus either.

i run my own splinter masto group, something i've mentioned before, and there have been a ton of times where i have wanted to stop moderating it (even though i moderate it in the loosest sense of the word) because i worry about it potentially creating some drama between me or my husband and the TMS board (especially since he is on the TMS board) but i would NEVER just delete the group and walk away from the people who used it for support. the only thing i would do is hand moderation over to someone else and just call it a day. i think it stinks to delete a group that over 100 people relied on for support over the dramatic goings-on of two people and then replace it with yet another super private, super elite group where people literally VOTE on whether or not you are good enough to be in their company. that kind of group doesn't benefit the amount of people the initial one did. it's just another insular society that will remain insular and only help the people it chooses to. i'd understand or respect it more if the masto community was huge, but it's not. there are so few of us and we're lucky enough to find each other for support of education or help and we -need- to do that. we owe it to each other to put ego aside and help each other. we're not going to get anywhere by continuously fragmenting or segmenting an already painfully small group. plus honestly, there are a lot of people who rely solely on FB for support with this disease.

 i am incredibly blessed that my husband, friends, and family have been super supportive since day 1 of my diagnosis. not all people are that lucky, and to have the hubris to decide that you can reject their pleas for support is baffling to me.

again, to be clear, i understand some people want their smaller masto groups where it's them and 10 friends. personally i don't agree with it because i don't like dynamics like that, but different strokes for different folks. but we're literally talking about people abandoning a very large support group without warning and leaving everyone to go screw themselves and replacing it with something that is nothing like the original, barely accessible to many people who relied on the original group. it sucks.

this community is too small and too delicate to keep dealing with these repeated fractures. and really, how the fuck many small secret societies do people even need on facebook to feel validated? why the hell is it that we can't just put aside our differences, recognize that we're not all that similar save for this insidious disease, and do all that we can to reach out and support each other without ego, without bias. no matter how many awesome exclusive groups someone might end up in, at the end of the day we're all still stuck with this fucking awful disease, and the more people we can learn from, reach out to, connect with, the more we benefit. the more ALL of us benefit.  not the other way around. not just a select few.

1 comment:

Anonymous said...

Well said and I totally agree.Being told by my doctor that these little cliques were harmful and lifethreatening in some cases really is true. I didn't want to believe that but I have seen the mastocytosis society and the masto world go downhill after the joining of a few malicious people that are obviously on the mastocytosis sites to hurt others. I wish they would stop their manipulation and lying and just get the hell out of the masto world and go to Myspace where the white trash is. That is where they belong! Their bloody actions are heinous!