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People With Chronic and Rare Illnesses Should Be Allowed to Be Their Own Advocate

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Medical errors are the third leading cause of death in the United States, but patients who bring medical malpractice suits to trial lose nine out of 10 cases. These startling stats, which are explored in HBO’s new documentary about malpractice in Aurora West Allis Medical Center in Wisconsin, are a documented but seldom-discussed danger of chronic and rare illness.

For some, like myself, medical malpractice is actually the cause of chronic conditions. For others, frequent trips to the hospital and comorbidities requiring the care of multiple specialists increase the chances that one day one of those specialists is going to make a mistake. And when that day comes, we can only hope the repercussions will be minimal.

Since becoming disabled by fluoroquinolone antibiotics in 2015, I’ve become my own health advocate – researching methods and medications before making decisions, because I know first-hand what blindly trusting a doctor can do. I make sure I go to the reputable sources, like Mayo, Cleveland Clinic and Johns Hopkins. I approach each doctor respectfully with my findings and questions. Unfortunately, like many with rare illnesses, I (as well as the research I lug to each doctor’s appointment) am ignored, dismissed or ridiculed by the very people who are supposed to help.

This happened to me again this week, when I went to see a neurologist with studies and newspaper articles in hand. The neurologist openly scoffed. She refused to even look at the studies, offered me pain meds, and when I declined, she left the room and did not return.

Knowing that medical malpractice and medical mistakes result in patient death and disability so frequently, it’s surprising that so many of us with rare diseases are treated this way by the medical establishment. Why the pushback? Is it an issue of pride? Because I already know each doctor I see spent years getting an expensive medical degree. But I also know that doctors are people, and people make mistakes. I don’t want any more mistakes made with my care. Are two heads not better than one?

Prior to becoming a member of the chronic illness community, I was an investigative journalist. Many’s the day I’ve regretted not using those research skills to investigate the medications I was being given in 2015. However, hindsight is 20/20, and all I can do now is to attempt not to make those same mistakes going forward.

So I research. Not to diagnose (though I do know many in the chronic illness community, myself included, who would not have secured a diagnosis had they not done research themselves), but to explore new avenues of treatment. In the case of the neurologist this week, I brought her news articles about a cream researchers are exploring to help those with peripheral neuropathy. I wanted to know if this might be an avenue of treatment for me. Without reading the articles, she gave me a cursory, “I’ve never even heard of it” and sent me packing.

I spent the remainder of my day crying, my bank account lighter a co-pay and my emotional and physical reserves depleted from my efforts.

It shouldn’t be this way. Patients shouldn’t be bullied or discarded for attempting to participate in their own care, especially when physician errors count for so many deaths among our population. No one is saying physicians should bow down to Dr. Google, but studies including “Clinical Research to Clinical Practice-Lost in Translation,” conducted by The New England Journal of Medicine, have found that the average physician is 17 years behind on the current medical literature.

Fellow warriors, we walk a lonely road. No one outside of ourselves can truly understand our challenges, but this doesn’t mean we should be alone in our pursuit of treatment options or wellness. For those of you struggling to find a supportive medical team that actually listens and considers what you have to say, I offer my condolences. It’s a struggle I share.

But please don’t let the naysayers and those who try to gaslight patients get you down just because they wear the white coats.

Continue to seek out those physicians who want to be allies, advocates, and partners in the process.

They do exist, and they are worth their weight in gold.

Originally published: February 6, 2019
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