The Tough Lesson I've Had to Learn as a 'Perennial Patient'

Growing up, we learn about career fields so simplistically. We study flashcards of policemen, teachers, doctors, cooks, and lawyers. We are taught to respect certain skill sets more than others — at times dictated by the amount of education a person pursues or the number of zeroes on one’s hypothetical paycheck. A higher degree means you know everything, right? Knowing everything means you should be rewarded with unwavering trust, right? No!

Each time I walk into an exam room for an initial consultation with a new-to-me practitioner, I arrive guarded and heavy, dreading the monologue I’m about to deliver of my messy medical history. If you’re like me, you bring years of unanswered questions, inaccurate diagnoses, and adverse side effects to medications you were hesitant to even try in the first place. At times, I’m too exhausted from being sick (oh, the irony) to even think about questioning a doctor’s recommendations. They should know best.

But one of the toughest lessons I have had to learn and am continuing to fine-tune as a perennial patient is this — doctors do not, and will never, care about you more than you care about you. Because the only person living inside that skin is you!

Don’t get me wrong, I wholeheartedly respect the work of medical professionals. As a collective group, they have saved my life and sanity again and again. But I think it’s healthy to also view them with a hearty dose of skepticism — just as one would with a financial adviser and your life savings or a real estate agent and the potential purchase of your first home. Trusting a doctor is like trusting your partner. While vastly different circumstances, both relationships require that you don’t lose yourself in the process.

About four years ago, I got a severe infection in my salivary glands that caused me to temporarily stop producing spit and caused my tongue to balloon on both sides. The pain felt a little something like a Chinese finger trap twisted itself into a super salty pretzel between my cheeks. After a very frustrating misdiagnosis by a local ear/nose/throat specialist (“You’re dehydrated, sweetie!”), I ended up flying out to Manhattan to see a surgeon whom I trusted from my college days. I remember bursting into tears (which were difficult to produce given said infection) in his office when he came in to see me, and I apologized profusely for making a “big deal” out of something that was probably nothing (it wasn’t nothing, mind you). To my surprise, he very stoically responded, “It is your right as a patient, Kat, to seek answers. Only you know your body. You did the right thing.”

To this day, his words have really stayed with me and I hear them echo off exam tables, OR rooms and MRI scanners. It was an essential reminder that only I know my body best. I can better differentiate migraine aura nausea from nerve pain nausea — though I can rely on doctors to articulate the difference when I’m unsure. They are an expert on the anatomy of bodies, and I am an expert on the on the rocky landscape of my body.

I pride myself on really developing as a patient over the years. I know that sounds odd… How does one get better or worse at something like that? But it’s possible when you seemingly do it professionally. When I was younger, I didn’t quite understand it was my right to ask questions of authority figures (specifically doctors). I somehow thought a four-minute appointment with an ear specialist was “normal” and what it should be. But over the years, I have learned to be my fiercest advocate because no one else can fill that role. I call offices if I need clarification after a confusing appointment, I take copious notes, I write down all of my questions ahead of time and I do my research before and after taking a new medication. I even fact-check my doctors with my local pharmacist, who I find often have more time and energy to discuss new treatments with me.

I believe to receive the best possible patient care, we have to be active participants in the process. Keep asking the tough questions (and for clarification when you need it) of your care team. The best doctor-patient relationships are those in which involve a dialogue and discourse. Your body will thank you for it!

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