It’s nearly a year since my diagnosis and the first thing I did was get on line to see who else out there has this crazy condition and how they are coping. I was overwhelmed with the amount of online resources and groups and I truly didn’t know where to start. I spent some time scrolling through them and as many of them are closed groups, I asked to join the ones that appeared from the outside to match what I was looking for; a community of people who have walked this road before me, who could guide me, connect with me and understand me.
At first I was welcomed with open arms into communities which all had a slightly different slant, they concentrated on only certain aspects of EDS, or they were much broader and included some of the many comorbidities that often come with EDS. They either came from the same areas of the world that I have lived or had medical treatment in, or they enveloped people form all over the globe.
What I liked about belonging to so many groups was that I was able to read up and follow so many threads and get so many different perspectives. I soon learnt that Northern America names a lot of medications differently to the rest of the world and worked out what they are in “normal-speak”. I made friends and dug around till I found my answers in all the various forms out there. I read pages top to bottom and made notes on everything. It was great…
Until it wasn’t. I had read about a lot of complaints but had missed them before I joined, and then as time went on I saw what people were complaining about. Some people trashed others, some were so bossy, other’s did not want to do the looking for themselves and just asked everyone to answer their questions for them, which upset the long termers who were sick of it. There were fake accounts and pushes for products and some groups had “in” crowds and outsiders who were ignored. Some groups were simply so huge that anything on the page was pushed too far down too quickly and would get lost before anyone could see it.
Some people were simply so constantly negative that others were complaining of being dragged down, and other sites did not allow a single negative complaint and people were being scolded for venting.
I started removing myself from many of the groups, and have remained in just a few which I really enjoy and can hop on when I feel like it and then move away again without being judged… Am I the only one who has found this a fascinating and interesting part of the journey? In the end I am starting to find “my tribe” among fellow bloggers and I love that the best, but I still hang on to some of my support groups who are a great place to go for a question or to support someone who needs it..