Why does it seem so difficult for me to find the support I need? And when I don’t “do” what people want…that doesn’t make me the bad person. This is laughable. I was in a support group for Cowden’s Syndrome. I thought it would be neat because this is people who “get it” (and I use quotes because BELIEVE ME…these people (well, except for a select few) DO NOT GET IT.) I’m very passionate about raising awareness for this orphan disease and I will shout it from the rooftops…but there were people in this group who didn’t like what I said, apparently.
Um, WHY? Did I strike a nerve? What did I generate in you that you didn’t like? Was I attacking you? NO. Then don’t say you want to generate a conversation or discussion if you can’t handle the response. That’s mighty hypocritical of you. MIGHTY hypocritical. IF you can’t stand the heat then get out of the kitchen. Just saying. I was thinking about this admin who removed me. How sad her life must be. How the support group must be her entire life now, I’m guessing by her actions. I mean by the things she shared…it’s tough stuff. And you know what else? She said she’s not a trained facilitator and she’s NOT because a trained one doesn’t remove a person from a support group when something is said that doesn’t jive with their feelings. AND! All I did was agree with her that this wasn’t a support group! Damn I was right on that.
I believe it very important to support Internet safety of the members. Every Tom, Dick, and Harry will not be allowed into this group because if you don’t know if they have CS or not…you are jeopardizing the safety of the members. I feel very strongly about this. Then, another person was made moderator and as I write this…it just gets more ridiculous. I am working on saving my life. Not on dealing with this crap of he said/she said. Not on these virtual hugs. And that’s all this group had. Hugs through the computer. I need some methods or researched stuff on PTEN and mTor inhibitors. How to make my body stop making tumors. Important stuff. Not b.s that these people are doing. Now some of those are great…I have real life people I can get hugs from. I have real life people who love me and who I love, who I can talk to and tell my inner most fears to about the chance of having breast cancer, uterine cancer, the tumors growing in my head. I don’t need the b.s. about so and so being upset because I brought up something she didn’t like and then being EXITED FROM THIS SUPPORT GROUP.
*HEY SUPPORT GROUP: THIS ISN’T PROVIDING SUPPORT. YOU NEED TO GO BACK TO HOW TO PROVIDE SUPPORT 101*. So, don’t say you’re not going to call yourself a support group because of “no trained facilitators” and then get ticked off when I call you all out on it. We are all human. We are all learning. Thank you all for reminding me that I don’t need to look ON LINE for my support. I have this blog which helps me to process my emotions and fears…but it’s a weird day in 2012 when people who share my rare disease push you out when you try to do something for the common good of Cowden’s Syndrome.
I’m not going to conform to other people. I am going to speak my mind loud and clear. My voice has value, remember? If others don’t like it…that’s too darn bad. These people weren’t ever my friends to begin with. I’m thankful that I’ve connected with a handful who seem to be very genuine. Others? I’m not putting up with your crap. Your unacceptable behavior is NEVER OK. Your b.s. I’m too old for this garbage and oh by the way? I’m focusing on living my life.