I am new to this board, I have FMS, severe CFS, as well as several painful pelvic/gyno conditions. For me, although I am in terrible pain most of the time, the fatigue is far more debilitating, and has pretty much stopped me from living my life. I was wondering how this has affecting others relationships with family and friends? Have you received support, or no? Prior to the FM & CFS, I was still able to do a lot with family and friends. I had a very close knit group of a few friends, and several other friends that I saw often. Then, gradually, I was able to do less and less, and as I had to cancel plans more and more over the years, I feel like I have lost most of my family and friends. A few are supportive when I do hear from them, but that isn't too often. I feel like of none of them really understand what I am really dealing with, how crippling the fatigue is, and how REAL it is.
I have a couple of acquaintances that have other health problems, ones that are far more well known, and I seem them get all this support. They have gofundme pages and facebook groups dedicated to helping them, and all this support. But in my case, and others like me, I see none of this. Don't get me wrong, I want them to have that support, its not at all about that. But I am no less sick, and my life has been no less affected than some of these people, in fact, worse than many of them. I don't need all that, but some supportive words every so often would be lovely. I just don't understand the lack of understanding and support for people like us. It's really frustrating.
I'm just wondering what the rest of you have experienced in regards to this, and how do you deal with it? Have you been able to get across to your family and/or friends what you are dealing with, and if so how???
Thanks for any input, I am really struggling with this. It feels like a real loss.