The key to reaping the benefits of American healthcare while being bludgeoned by its oversights is to not let on that you’ve self-diagnosed on Reddit. 

I knew what was wrong with me before I arrived at the Rochester Mayo Clinic campus last July, but I needed the golden seal of approval to validate my suspicions. Seeking treatment for chronic health conditions is a game: appear ignorant enough to stroke the doctor’s ego and competent enough that they’ll provide quality treatment.

Amid a viscous rhetorical landscape surrounding diet, lifestyle, and health at large, it can be tricky to be a conscious patient. I had to embrace the fact that, though I wasn’t an expert in any field of medical study, I was the most intimately acquainted with my condition. 

This is a truth easily forgotten when you’re desperate for relief. 

Strewn out in hospital beds and specialized clinics like a trust-fund junkie, it’s easy to accept any treatment given to you without a second thought. It’s just as easy to reject options as futile attempts at fixing the unfixable. Both mindsets offer only a trap of misery.

The first Mayo Clinic neurologist asked me why I was so “resistant to medication” as his fingers rested on my heap of medical records. Before confirming that there were no cameras in the corners of the room to reveal I was on a 2000s prank show, I quickly explained that I was a compliant patient, but years of my life had been sacrificed to medications that hurt me in the end.

The neurologist laughed at my hypothesis that my invasive Botox treatments had adverse effects on my underlying spinal condition. After speaking with a neurosurgeon, an emergency room doctor, and a handful of people on Reddit who looked over my MRI, I’d theorized that if my muscles were not strong enough to hold my head up properly, it would increase pressure on critical discs in my neck.

But of course, the doctor scoffed at me. Botox, my neurologist told me, had been used for “decades” to treat pain like mine.

Except for the fact that Botox was approved for migraines only in 2010. Long-standing studies about efficacy over time and comorbid disorders have not been done. I wasn’t arguing that the treatment didn’t work. In fact, it’s the only treatment that has ever worked for me and granted me any quality of life. But I came to the Mayo Clinic to get to the bottom of my condition and learn to treat it sustainably — not to slap more Band-Aids on gaping wounds. 

After months of a downward spiral and bimonthly hospital visits, cervical dystonic episodes which locked my neck sideways, and daily pain at a level never previously felt, all the doctors at the premier American medical center could give me was a “Sorry, kid. You’re screwed.”

Here is where I had a choice to make: believe the man experienced in treating my very condition at a top hospital, or push for more — cordially accept what felt like a death sentence, or risk being perceived as difficult.

I pushed the neurologist for a referral to see a spine specialist and managed to escape his dimly-lit office with my golden ticket. I’d only have to wait until October, the neurologist said. 

I called the spine clinic every hour for two days until they let me see someone whose schedule magically opened up. Call it fate, call it persistence, but I got an appointment on the last day I had scheduled to be in Rochester.

I explained my hypothesis to the second specialist. After a physical exam and a review of my tests, he confirmed that my invasive treatments were actually having adverse effects on my underlying spinal condition. 

So Reddit and my plethora of random opinions from various practitioners were right. 

I’ve spent nearly a decade of my life in chronic pain, have structured my whole life around my condition, and I still believe in doctors. I still believe in the hope of modern medicine, the promise of new treatments, and the recent research being done to improve the quality of life for thousands of patients like me. 

The road to relief is paved by egregious mistakes, a lesson you don’t have to be incredibly sick to learn. The medical profession is a faulty one, as all human industries are, but one we still need. I needed the Mayo Clinic to give me the tools to navigate things I knew to be true. Being an advocate for yourself as a patient is just as important as instilling trust in the systems set up to aid us.

 

Ally Hall is a senior studying Rhetoric and Media.