Physically Burnt Out From Seeking Treatment
I am physically burnt out from seeking treatment.
Since developing right-side hemiparesis and then a scary episode of speech loss, language disruption, and left side weakness all within the past month we have been trying to get me investigated for neuro Behcet's. However, my Myalgic Encephalomyelitis diagnosis is making it impossible. I am constantly blocked by doctors who do not accept that I am bedbound by Severe ME and try to recommend GET and CBT so I can "get better" to come in for testing.
Never mind that I am rapidly deteriorating so with each passing day coming in for testing becomes less feasible.
My doctors even went behind my back contacting my psychiatrist without warning or consent and telling her I was in the middle of a mental health crisis (the only symptom of which I displayed is being bedbound). If you don't know why this is so scary look up to Sophia Mirza who died from a similar "intervention". Thankfully my psychiatrist is a very understanding woman who reached out to me directly. But it has not helped my frustration or medical trauma which I fight every day to try desperately to get treatment.
Which is what is so frustrating, because there is a treatment for neuro Behcet's. Unlike MECFS, this may actually be a problem we can solve. Yet because of the discrimination and stigma against ME we cannot even get through the door to try it. It is also incredibly frustrating to be told I am depressed when I am working harder to live than I ever have in my life. If my doctors listened to what I am saying perhaps they would see that.
But my body is giving up on me. The number of phone calls and dealing with appointments just to have them backfire and turn into fires to put out is absolutely draining. As is the month plus long migraine I've been dealing with. I want to keep fighting this but at this point, I am largely reliant on friends and family to do the actual fighting. This is what misinformation about "chronic fatigue syndrome" does. This is why we need to fix it. This is why the world needs to know about very severe ME.
