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When I received my autoimmune diagnosis several years ago, it was like a satire of poor bedside manner where I, as the patient, was the butt of the joke in a system designed so patients have limited access to information, little or no leverage, no advocate, and all the risks and expenses of their situation.
I’ve seen 5 different doctors and gotten a variety of indifferent points of view over time. This story is part of that journey.
“Do you have an autoimmune disease?!”
After seeing my allergist for a few years and telling him about various concerns, all of which he argued vehemently were not allergic — including tiredness, fatigue, stomach upset, various digestive issues — he finally asked, exasperated, “Do you have an autoimmune disease?!”.
I was a little shocked, more that he asked me something I couldn’t possibly know, than he finally recommended a possible answer to my continuing questions.
“I don’t know,” I answered, “That’s why I’m seeing you.”
He said he could order some tests, then he didn’t write the orders. We finished our visit, I temporarily forgot about the orders, and he walked by as I was paying the administrative staff. I asked him if he’d write the orders. He hesitated — maybe autoimmunity is outside the narrow confines of the allergist/immunologist ‘s area of practice or concern — then he wrote the orders.
When the results arrived, a member of office staff called to say everything was normal. I asked for a copy of the results for my records, and when I reviewed them I had questions.
Two of the results were unequivocally out of the “Normal” range for the assessment. I called to discuss those, and she fudged, clearly out of her depth. She made up some implausible explanations, then when I asked more questions she said I should probably speak with the doctor.
The doctor said something like, “Basically, your body is attacking your thyroid gland. Eventually, your thyroid gland will burn up, and you’ll go on thyroid medication.”
“Will I ever be able to go off the medication?”
At this point I’m thinking this one-way ticket to chronic medical supervision and pharmaceuticals is a bad joke, where our medical/insurance establishment has written a storyline for people to follow through a lifetime of chronic illness and medical treatment.
This is the perfect business model for:
- people in white coats who run businesses called doctor’s offices,
- the manufacturers of the pharmaceutical products only the people in white coats can prescribe,
- the people who work for the insurance companies who pay them, and
- employees and investors in all those and related enterprises
The arrangement is lousy for the customers and the economy, since the end of all this inconvenience, discomfort, and cost is always a fatality.
“What’s plan B? If I were your sister or daughter or mother, what would you recommend they do?”
“Well, that’s pretty much how it goes. I guess you could talk to an endocrinologist.”
For the slapstick account of my visit with the endocrinologist, click here.
Alternatively, go here to learn what I’ve learned about being a smarter medical consumer.
Also published on Medium.