Blog: The fear in my doctor’s eyes by Anil van der Zee

Andy

Andy

Retired committee member
Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really.

During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, chiropractors. The only way was up. Back to full health and recovery. I was considered a reliable dancer with a focus on “the show must go on” and a patient with great resilience.

When I contracted a cytomegaloviral infection and didn’t seem to be recovering, that all came to a squeaking halt. I tried all the go-to treatments like graded exercise therapy (GET) which didn’t really seem to work. In fact the building up of my activity levels made me significantly worse!

I suddenly became a patient that nobody knew how to really treat anymore. Walking into the office of my doctor had a whole different feel to it. From the “all smiles there’s Anil”. To “Oh gosh there’s Anil”. There was a certain fear in my doctor’s eyes!
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http://anilvanderzee.com/the-fear-in-my-doctors-eyes/
 
Thank you Anil for this excellent blog! I know that just sitting, thinking and writing this amount of material can be shattering for pwME.
I hope some send this out to the powers that be.

It is brutal that the medical profession still doesn't know diddly about ME. Funny story in a rather grim or negative sort of way: I had two visits to the same doctor about a year apart. Both times I said I have ME. Both times, he had no idea what it is, despite me providing excellent government info the first time. Which unfortunately elicited the usual eye-rolling treatment. I know medical professionals have tons to read, but was hoping the informative government info might have made an impression. I'm in Canada. To avoid the eye-rolling, or worse, the yelling, coldness etc., now when medical people ask, I just say Health Canada has good info about ME. I don't explain what it is. Why chance getting some kind of negative treatment again.

I hope that very soon, pwME in countries that still promote CBT/GET will also be able to say there is good info on their government websites.

And, I hope that very soon my governments will actively engage with the medical professions, and teach them about ME; not just have it on a website.

Thanks again, Anil.
 
I met Anil van der Zee four years ago, when he invited me to do a video presentation for an Amsterdam event. Since I love Amsterdam, I showed up in person. I was able to visit him briefly on that trip, and on a couple of subsequent trips as well. Anil, a dancer by training, has been homebound for years. I would have loved to have seen him dance in person. He is also an amazing photographer and a sweetheart.

Below is the beginning of his recent post, “The Fear in My Doctor’s Eyes.”
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https://www.virology.ws/2020/06/02/trial-by-error-a-couple-of-blog-posts-worth-reading/
 
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