UC wife - you can't imagine how much I appreciate those tips! The announcement was posted on the Crohns & colitis association (DCCV) website forum, in their monthly membership magazine (goes to over 20,000 people Germany-wide), my GI is posting the information all over the hospital GI Clinic, and there are 3 or 4 additional hospitals with GI clinics in town. So I probably won't have left anyone out in terms of information.
But I think the point you made about
those who are not yet ready to communicate or to need communication about
what they are going through - strikes me as being very real and I am taking it into my view. There is a big gap between lurking for information and going to a face-to-face meeting. So there might be a phase when few people show up and there are others who are aware that the meeting is available and won't be ready for it for months. The DCCV gave me a lot of support material about
group-formation and group-moderation, and it says the minimum is six people. The first meeting is about
6 weeks away and I'm glad to have that much time to prepare, somehow, at least develop an idea of the best way to give form to the first meeting so that people feel it will be productive and helpful for them.
I am also finding I am driven to help and support other people, which, to be honest, is a new feeling (I would otherwise describe myself as too selfcentered
). I think that once you have been through something like living with illness and then several surgeries and whole lot of adjustment and learning, you really need to grow from it and turn the experience into something productive (the lemons to lemonade thing).
Regarding the person at your meeting who made a turnaround in feeling - I can remember a time in the beginning when I was so despondent that there was nothing anyone could do that was right for me and a lot of info may have been simply too overwhelming. I only wanted to weep, and naturally that is a phase that will have to end and give way to new thoughts.
The other night I was on the phone with a woman in another city about
something I had bought from her on ebay, and somehow we got on to a few other subjects and from there she described symptoms she had been having on and off for 4 years that are so typical of the chronic inflammatory diseasese. Upshot is she will now make an appointment with a GI at a learning hospital nearby, but until she had finally layed the symtoms out on the table to another person on the phone, she was more or less in denial that something is not right. We were both quite astonished at how coincidences work and somehow stayed on the phone for 3 hours about
illness and philosophy.
If you have any more insight about
groups I'm very glad to read it here, many thanks!
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about
to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.