BEING INVISIBLE
Hello, dear @moi2558!
Thank you so very much for sharing your experience.
Most people (doctors included!) have NO idea of how difficult it is ''to survive'' (and I use ''survive" because to use "to live" would be wrong ) with CFS/ME.

I believe the main problem is that most people, unfortunately, react to (and somewhat understand) only what they can "see": A broken foot, leg, or both arms.
To try to explain what CFS is is like expecting people to believe in the Holy Ghost or in something else invisible.

As a matter of fact, this is the very FIRST time I actually meet someone who has had and has a similar experience to mine.

When I was new here, and I wrote my first post about CFS/ME, nobody reacted to it and so I thought that ... that post too was invisible!

I have copied and pasted it because I want you to know that you are not alone and that I know all too well what you are talking about.

"CFS/ME
I have been struggling with this disease for so long. Just trying to find some info on these pages has made me feel exhausted. I have tried to find support groups in the city where I live but found none. I would appreciate it so much if someone with Chronic Fatigue Syndrome would write and tell me how they cope with it. I am sick for about 6-7-8 months every single year. I am doing better for a couple of months and then I get really sick again (the worst is the total lack of energy and the terrible feeling of being unable to do things that were so normal for me before. And I am talking of very basic things.) When I get so sick I also get terrible depression. Right now I don't know which of the two is worst. I only know that I am not well at all and that I feel miserable. It is so sad when I hear my doctor say with a kind of arrogant smile: "You know, there are many doctors who do not believe in CFS …". I know she is one of them. I feel it is offensive. I now go to her only when I need to check my thyroid (Hashimoto, fibromyalgia, osteoarthritis, etc.) or if something else is wrong. Otherwise, I try to avoid seeing her. I have not found a doctor who is knowledgeable about CFS."

I wish you all the best, moi2528! A big hug and Merry Christmas!