Understanding (2) - Advent
When finally you understand the political and medical negation of ME - in a fabricated sea of fatigue and vague definition, what can you be left with other than anger?
It is hard enough to cope with the severity and torment of symptoms, but when you then experience denial, mistreatment, lack of proper testing, misinterpretation - a negation of the physical reality and most serious neurological symptoms, leaving people vulnerable, damaged, mistreated or not treated you have to ask what is this all about?
You have to understand what is going on in order to survive , because you simply fall off the equality ladder and into a sea of relative views and personal opinions.
You lose respect and you become interpreted in a variety of incomplete and limiting terms that mean nothing to you and have nothing to do with the serious severe illness and system dysfunction that you actually have.
This is the understanding you need, if you are to avoid abuse and harm. But even with it, it becomes harder and harder to survive and harder to find practitioners who actually have the required medical knowledge and understanding to actually help you.
It is harder not to be harmed as the years go by.
This is the sad place of understanding that we have reached after 19 years.
Understanding is essential , but it does not necessarily bring hope; it is so shockingly bleak.
Yet still we hold on to it in our search for Truth and a path forward out of chaos.