Friday, December 19, 2008

wow, just wow

I feel like I complain so much about the main masto listserv that I should seriously stop referring people there. It's become such a toxic and nasty environment, something that is painfully obvious and something no one wants to discuss. Sometimes (and no offense listreaders who may be reading this) it's like dealing with a bunch of children (and I am including myself here because I would be remiss to say that I am a flawless bastion of perfection or something)...which is awesome since I'm one of the younger people on the list.

In September, some big drama transpired and people started leaving the list in droves. It has been obvious since then too, honestly. Posting in down, seems to be frequently from new people, a lot of more frequent posters barely seems like a relatively unpleasant environment at times. I honestly don't know all the background stuff that transpired, but it wasn't pretty overall and no one left the situation in a 100% good place. Instead of addressing our lord of the flies type dynamic, it all got swept under the rug and the list moved on. sort of.

A few days ago someone accidentally sent an email to the list that was meant to be private. In the email they said a few unflattering things about another list member. This is an of itself wasn't awesome, but they followed it up pretty much saying, "yeah I don't care that my post could potentially humiliate the list member I slagged on, I'm glad to have gotten it off my chest."

Now, I don't live in some fairytale planet where we all get along and are best friends and sing kumbaya next to the campfire every night. I assume that people are going to dislike other people and possibly think the worst, but to be so dismissive of the fact that something you wrote could hurt someones feelings, to me, is tacky and disrespectful. While I don't censor myself on this blog, and let the occasional swear word slip in, I make a serious effort to not swear on the list because there are a few ardent Christians who are seriously offended by that sort of language. Obviously if they read this they know that sometimes I don't use the most pristine language. This is also my little corner of blog-dom, so I'm kind of allowed to call the shots. I obviously don't view the list the same way, and when I do slip up, I apologize. Not because it's what I "should" do, but because I feel bad.

But this nonsense just seems to escalate and people seem to get more angry when it's suggested, "no really, we need to start addressing this shit because it's obviously not going away". I dunno, I'm not one to avoid an unpleasant topic or situation. I'm not saying I seek conflict out, but when it continues or seems to have long term ramifications, I don't think ignoring it is the best thing ever.

I have a few huge pet peeves, and one of them (when dealing with mailing list etiquette) is when everyone starts posting to drop a subject, why a subject sucks, why the people discussing the subject suck...and it's so fucking counter productive it makes me want to tear my hair out. If it bothers you, don't get involved. If you don't care, don't get involved. But when people are emotionally engaged in something, if you tell them they are a moron, chances are it's going to escalate things. You don't like a situation, you think you are better or unaffected by a situation? IGNORE IT. Don't waste the time dismissing people who feel differently.

I just am left feeling like I can't trust the list. Whenever there is some high drama I inevitably get between 5-10 private emails detailing why some person or another is a (insert reason why they might be lame) person and should be avoided. I don't like it because it is starting to feel like we may have teams in the background with these invisible lines drawn out in the sand...sort of "either you're with us or against us" type mentality going on. I don't want to get involved with people's drama off the list. If I have something to say to someone, chances are I will say it publicly because I don't want to take part in some cloak and dagger bullshit in the shadows. I prefer there to be a level of transparency in how I operate. Which again is why I'd prefer the list to actually try to solve interpersonal problems as opposed to ignoring them till they go away.

I mean, I don't know, I'd rather deal with a short burst of intense discomfort than trying to ignore a small nagging one for months on end...which is unfortunately at odds with how things are apparently dealt with.

It's just annoying because I know the list can be better than that. Either that or it's all been phony sympathy and empathy meanwhile everyone is just waiting to see someone mess up and then attack.


Anonymous said...

I am in the same place as you in terms of the state of your condition and am about the same age. I appreciate your blog. Question, I saw in one of your posts that you get an antihistamine from Canada. Do you literally go there or do you get it over the internet? Do you take Gastrocrom? Does that help you?


Bridget said...

my doctor wrote me a prescription for it (it's called Ketotifen) and i fax my prescription sheets to a pharmacy in Canada (Jan Drugs) and they mail the drugs to me. it's pretty easy. I also take gastrocrom and that does help me a lot.

Anonymous said...

thanks, i took gastrocrom for like 3 weeks and I didn't help so I quit. It was hard for me to take it at the same time everyday. I think maybe I should have stayed on it longer to see if would have worked

The Spotted Mom said...

I am with you. this is Mishele aka the spotted one. I follow your blog and you helped to inspire me to start one of my own. Thanks for all your support. Hugs

Anonymous said...

Merry Christmas and Happy New Year Bridget

Kim said...

keep on the Gastrocrom anonymous, it takes a while. sorry Bridget...guess some people have issues...i don't know...seems like some people like to be "i'm sicker than you are" but anyway Merry Christmas!! and be well!

R said...

Hi, I am going to go and read all your entries tonight..
Some good info so far.
I have the fantastic looking spots all over and am the also 30. Have had masto for maybe 4 years. Looking for networking/ sense of peace with others that are going through the same journey. Please send me emails
Happy New Year

Anonymous said...

I know what you mean - Sorry I just found your blog so I may be leaving comments on random posts as I read. But i guess my problem with the list is I'm sick of the "woe is me" attitude. I'm 26 and have had masto since I was born, practically, and I feel like people on the list are either way older and just diagnosed or parents and are unrelateable. I just want to say "you have this disease, now let's figure out how to live with it, not complain out about it."

Anonymous said...

how in the hell do join the list. i would love to tell those "i'm sicker than you" gripers what i think of them. it is probably some of the same ones in the masto society, right? when i first contacted the society years ago they gave me no hope at all for my life. I have heard that the society has gotten better about that since then. i hope so! i do see where they have changed board members and the publication tends to be quite interesting and full of advice. someone tell me how i can join the list serve. We need to participate in all that we can so that new comers do not think that this diagnosis has to be the end of their lives.