When I was first diagnosed with Polymyositis I went in search of support groups. I looked online, on social media sites and basically, anywhere I thought I may find the support I was looking for. Now, I cannot guarantee that I did not overlook a group, but I did not find anything at that time. I decided to start a Facebook group and a blog to not only try and help myself but to also invite others to share experiences, learn from one another and provide each other with the support and understanding that only someone with Myositis can provide.
In my excitement, I titled everything “Polymyowhat: Understanding Myositis.” At the time I thought it was clever and that it would work. What I did not realize at that time, that I now do, is I was unknowingly deterring those with Dermatomyositis, Inclusion Body Myositis (IBM) and other forms of Myositis from joining as they thought, rightly so by the name, that it was only for those with Polymyositis.
When this was brought to my attention I went in to change the name of the group on Facebook however I was too late. Facebook’s group policy at that time did not allow for name changes after you acquired a certain number of members (believe it was 150 or 200) and we had bypassed that number.
Therefore, I want to apologize to those who may have missed something shared in our Facebook group that could have potentially been helpful to you. Since my diagnosis, there are now a number of Facebook groups, some of which may have been around prior. We share a lot of the same members but you do get something different out of each group. I am a member of a few others.
I simply wanted to be sure that everyone knows, no matter what form of Myositis you have, you are welcome to join our group, write for our website and participate in any online events that we may have. I know I speak for the group when I say we hope to see you soon on Facebook!
(Note: “Polymyowhat: Understanding Myositis” was the very first support group created by the now founder and president of Myositis Support and Understanding (MSU), Jerry Williams. That group is no longer available. See all support options through MSU.
Tags: myositis support support group for myositis
