Wednesday, May 9, 2012
for most of my life i was raised as a fairly half assed catholic. i went through baptism, communion, confirmation, but my parents always taught me to read everything as objectively as i did roman or greek mythology. that many of the stories should be looked at more as metaphors or fables vs being the straight up truth. then i went to a liberal college in a liberal city and hung out primarily with people who might not always have been politically liberal, but were at the least very socially liberal.
when i got diagnosed with masto and started seeking out support groups i ran into a lot of christianity, moreso than i ever had in my entire life. a lot of people just follow christ's teachings and do it to a degree that should do the church proud. they're pious but accepting of other people regardless of race/religion/sexuality and to me that is awesome, i imagine that that sort of attitude is what christ would want.
i've also run into a lot of people who seem to almost use faith as a weapon, a banner of pride that they are not living up to the expectations of. it bothers me because i don't find that personality type agreeable but it also bothers me because i don't want to find it disagreeable. the whole live and let live thing is really important to me, and i hate when someone does something i foolishly judge as offensive and i think something like "oh screw them, they're being a dumb neocon" cause when i do that, i'm being a dumb liberal. focusing on our differences is useless.
i think stuff like that is why i dislike and continue to further dislike facebook as a form of a support network. i would love it if the TMS could make some sort of messageboard system on their website where we focused on each other in terms of the disease vs learning about politics or affairs or religious beliefs or favorite bands or racist quips or whatever other random things that come up through facebook which presents itself with a much more social tone vs solely medical or support. Cause really, on facebook I have something like 680 friends and no one needs 680 friends, and while i like meeting other masto folks in real life i'm so very rarely looking for emotional support when i hit up any of the support groups. it's more "hey how to people tolerate this antibiotic" vs wanting to talk on the phone or share innermost thoughts. maybe that makes me a lousy or distant person, i am not entirely sure sometimes. suffice it to say it would not be the first time someone said i was distant.
even still, while i'm not angry about it any more, i'm disappointed that the holistic group was turned into a social group and was essentially taken over by a very cliquish and (in my opinion) negative group of people (not the moderators, who i like but who now, big surprise dislike me due to their new fb friends). i just don't see how anyone can tolerate or accept the rejection of others when they are seeking help for something that such a select few know anything about. i wish there was someone who could just slap all of us (including me) upside the head and set us on the right path of acceptance and inclusiveness instead of all this back biting nonsense that is just continuing and seems to get worse over the years. it's frustrating because i do feel that some people are viewed as troublemakers. the problem with that is, that from whatever vantage point you're at, you're gonna see what you consider to be troublemakers. the thing is, depending on where you're standing, that group becomes populated with different people. there are very few instances where one can say objectively "ok man, that wasn't cool". it's all such a matter of opinion, and i guess (to me) when it comes to medical support groups for orphan diseases, opinions should be left at the door. cause regardless if i view someone as an uptight neocon or they view me as a filthy hippie, at the end of the day we're dealing with something far far FAR larger than each others perceptions of one and other.
it's stuff like this that is really making me rethink my position on all the support groups. when i first got sick, my doctor (who is one of the top notch masto doctors in the country) flat out told me to avoid support groups as they were negative and rarely helpful and often harmful. at the time i ignored that because i wasn't really aware of how individualized this disease was and i wanted to hear other people's experiences and learn what things to avoid and embrace. 5 years later i've come to realize that it's impossible to glean that information from each other as we're all so different. so why do i stay? is it because i want to help other people? at this point i've just heard that the aforementioned clique of twisted sisters is more than happy to smear my name as well as other peoples, so who am i helping? i'm assuming new people will just be told i'm a jerk or something so they probably don't even want to listen. i certainly don't need the additional conflict, that's just gotten so old at this point it's unbearable.
all griping aside, i have met some really awesome people though. people who look past the differences, past the drama, and just exist....and that's where i want to be. that's where i need to be.