So the documents are off to the IRS and although this means that I will be entering in to a new sphere of red-tape… I’m excited. Each small step brings me closer to the larger goal and that is very satisfying. Maybe the hurdles jumped and goals achieved are what is to be on the landscape of SoftServe Matters- the engine behind MS SoftServe. There will be web development and grant applications. There will be involvement from those who want to put their mark on SoftServe and ultimately more sites will be generated for more illnesses. Helping more people who struggle with information overload but want to learn.
And then there were faux pas.
So with the new video up on mssoftserve and youtube I thought I would reach out to the people on patientslikeme.com. It’s a site that I had set up my profile– which includes all of the details of my history with MS, the treatments and otherwise personal information that seems natural to share here. I would review the chats, being careful to steer clear of information that elicits anxiety. Sometimes I would make a comment, but mostly I would just read and listen to what people are saying. Hoping to add to my understanding of this diverse group of people that I am a part of.
So I set up a forum to inquire how people on plm prefer to get information about their MS. I explained what I’m doing and invited people to check it out and let me know what their experience learning on the internet is.
Imagine my surprise when I got this as a response:
“Please explain the reason for this post. I have looked at both sites and it is really confusing. I think the hmmmmmm is now what are you selling.”
“…..selling or smelling a rat?”
Ouch! Okay with further explanation the person retracted the “rat” comment… but that sure did hurt to read. I guess in these times one can’t help but to be wary of these types of things. I was in a bummer of a mood looking for a pick up when I signed back on the site. Hoping to see supportive comments and instead finding the contrary. It was unfortunate timing.
But it also was an opportunity to learn a lesson.. which I definitely have. In some ways it is like a code of honor. If you aren’t an active part of this group then it isn’t appropriate to speak to this group. Just being registered isn’t enough. The fact that I hadn’t yet posted much to the site was a red flag to the involved members that I am not one of their neighbors, and they have no reason to trust me. I get it. Now I’m chatting more, and blogging less. Hopefully it will balance out.