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How Doctors With a 'God Complex' Contribute to Medical Gaslighting

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“Lose weight.”

“You look fine to me.”

“Your labs are normal.”

“Are you making this up for attention?”

If you have a chronic or complex illness for any length of time, you’ve probably heard these over and over. This is the reality of having to navigate the American Medical Industrial Complex. The main discussions around “fixing” this system revolve around runaway costs and access to insurance coverage. However, there is another massive contributor lurking behind physician doors: ego and the God complex.

I’ve been in this system for over four decades trying to seek care for rheumatoid arthritis, lupus, Sjogren’s, and hypermobile  Ehlers Danlos Syndrome. That’s the shortlist. As a child with active autoimmune arthritis symptoms seeking relief, my diagnosis was delayed because doctors didn’t want to believe someone so young could have “arthritis.” Over a year and a half went by with doctors pushing physical therapy, which caused permanent damage to my right wrist. My labs showed significant inflammation but were ignored. This is not uncommon, especially with autoimmune diseases.

In 2016, I had a C1-3 fusion for atlantoaxial instability from my hEDS. Within weeks, I realized something was very wrong. I had experienced muscle weakness prior to the surgery from the near-fatal compression, but now I had extreme pain in my shoulders and jaw. The pain in my right shoulder resolved some, but I lost the ability to use it without searing pain. That took a year. My left shoulder seemed to have the same problem and despite being my “good” shoulder, it was getting worse by the day.

I was dismissed by physical therapy and told they didn’t know how to help me. My surgeon dismissed it as lingering surgical pain – but something was wrong. Over the course of the next four years, my shoulders deteriorated until I was hunched over and experiencing a suicidal level of pain. I visited over 20 doctors, each dismissing my symptoms and many gaslighting that these were even real symptoms. I was on the doctor merry-go-round and couldn’t get off.

Four years later, I found my spine was collapsing, there were three large masses in one of my shoulders and I had wasting syndrome from a physician prescribing something contradictory to my illnesses. Know what else I confirmed? That 2016 surgery also had dislocated my jaw, permanently realigning it. Both rotator cuffs were torn, and my right shoulder was fractured. All of this had been ignored and my symptoms were dismissed by physicians. Ego-driven medical professionals had caused more permanent damage to my body and mind than all my illnesses combined.

I wondered if I was the only patient dealing with this, so I checked around on social media. Come to find out, this is an extremely common experience, and it leaves patients with medically-induced PTSD. We give up and stop seeking care. We spend hundreds to thousands of dollars in search of a golden goose – the doctor who listens. Our relationships get strained, we develop mental health issues, we lose money we don’t have, and get medicated for problems we don’t have. This must change. Physicians charge astronomical fees for their “expertise” yet dismiss our symptoms in the same breath we are labeled “doctor shoppers.” It’s not OK.

I’ve started to fight back, and you can too. File complaints with the state licensing board, leave those reviews on social media, call your insurance companies and file complaints, and stop paying ridiculous fees for doctors who are more concerned about their designer suits than your care. Nothing changes until we fight back, even when we are so tired of fighting. This cookie-cutter medical-industrial complex is growing, and it must be stopped. I know I’ve had all I can take and am done. What about you?

Getty image by Utah778.

Originally published: April 7, 2021
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