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Why Getting Sick While Working in Healthcare Doesn't Make Me 'Lucky'

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I am in the healthcare field and have, for my own health, been to countless doctors over the last six years. Almost every single healthcare provider has said to me some version of how wonderful it is that for having been through such a health ordeal, I will now be able to deliver compassionate and empathetic care that other healthcare professionals simply cannot offer.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It always feels insensitive at first, as though they are telling me how lucky I am to have been affected at age 22 with an incredibly painful, life altering chronic illness. Up to that age I had been an extremely active, high energy student excited about the places life would take me. However, after two years of medical school and nearly four years of searching for the cause of my progressively worsening symptoms, I reluctantly took a year off and, armed with a newfound ocean of medical knowledge, devoted myself full-time to figuring out what was going on with my body.

In a rare occurrence, I landed in the hands of a doctor willing to listen carefully to my years of history, devote time to diagnostic research, find top-notch specialists, and advocate on my behalf when necessary. I was ultimately diagnosed by a genetic cardiologist with Ehlers-Danlos syndrome – a condition that couples extreme joint laxity with dysautonomic symptoms such as nausea, temperature dysregulation, migraines, facial flushing, syncope and fatigue. Equipped with a diagnosis, we were able to put together an appropriate healthcare team, which has allowed me to treat and manage my condition rather than continually slip backward toward pain and reduced functional ability.

My first thought when doctors inevitably mention my capacity to empathize with others in similar situations is always, without fail, that I do not feel lucky. I have been stuck with large needles, scanned with noisy machines, and severely injured by doctors pulling on my lax joints. I have stared astounded as an orthopedist yelled angrily at me, “You have to take care of yourself! You have to take care of yourself!” I have been summarily dismissed by a half-dozen providers saying, “Well…you look great!”

I would not wish this experience on anyone and I will always have the instinctual reaction that I am not “lucky” per se, but…I also know that they are right that I would not be who I am today without this illness and everything it entails.

I am more compassionate toward those who have experienced a loss, more aware of the value of each passing moment, more knowledgeable about the power of regret and fear and gratitude, and more determined than ever to have an impact on the healthcare system and the patient experience. It is my greatest hope that my experiences will help more people achieve positive outcomes on their own healthcare journeys. I do not believe patients should have to go to medical school or take a year off to find a diagnosis and treatment plan. I do believe that every patient deserves the best care possible with providers who listen, work collaboratively, and engage patients in their own care.

Getty Image by Stockbyte

Follow this journey here.

Originally published: June 20, 2018
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