@duncan I don't know of anyway that anyone could understand what we go through besides being at these appointments. I keep thinking maybe I should wear a body cam cause the behavior of the medical community is beyond believe.
This week I had two appts, one a rheumatologist and the other my new primary care doctor. The rheumy kept referring only to my Fibro. I asked her about the IOM report and to her it was useless due to lack of treatment recommendations (obviously she didn't read in depth).
The new primary told me outright she didn't know anything about CFS. She seemed more interested in what doc had the audacity to make the diagnosis.
I met with both to try and get a work assessment completed so an agency that helps disabled vets find suitable jobs could evaluate my work feasibility. Absolutely no help from the docs! "I'm not trained to make these assessments""I don't do this for CFS...I know nothing about it""I can't help you". All that time and energy for nothing.
I struggled to care for my son that evening. Actually fell asleep on him( a four year old) several times. Dinner was cereal and no bath. I've been dragging trying to avoid a crash and putting this post together had taken an hour.
Unless someone sees this daily or is living it, there is no way they will get it.
I think it would be a huge wake up call if some of these horrific medical exchanges were filmed for all the world to see how we get treated.