The Cost of Chronic Illness: Two Worlds and Two Kinds of Disbelief

In November I stayed up all night with two boys and a bottle of bourbon, following the US election results. There may have been popcorn involved too, but my memory is foggy. At six o’clock AM or some equally ungodly hour, the race was called. We had by then watched a clip of Donald Trump on WWE Smackdown upwards of thirty times—La Sexta TV played it all night alongside the electoral map and “Latinos for Trump” footage from New York. I had watched Pennsylvania turn red and slumped defeated into a sofa that wasn’t mine. I took the metro home then, even though what I really wanted were churros and to be dreaming. Line 5 was scattered with early morning commuters who had lived a night much different than the one I had. At my stop, a man was screaming “noooo” and vomiting into a trash bin. A Spanish woman stood at the news kiosk in front of my house and announced “we have a new president!” I climbed my stairs and went to sleep. When I woke up in the afternoon, I ate a bag of Doritos for breakfast. It may have been raining. In my memory it is. I listened to R.E.M’s “Everybody Hurts” on repeat. My two worlds, the one I’d left on the other side of the Atlantic and the one I live in now, both felt surreal.

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See, although I live in Spain now, I grew up in the United States. I am among the fortunate in that I never went without the medical care I needed growing up, but I remember my mom gathering letters from doctors and spending countless afternoons on hold as she petitioned our insurance company for more test strips. As an 18-year-old I wrote appeals to the same company for CGM coverage, a technology that was then in its early days.  In the most dramatic of all my visions, I saw my future divided: Life as a student with insurance coverage and then life after insurance coverage ended, at which point I’d probably have to sell my soul and my dreams to some company I didn’t really want to work for and spend hours on the phone begging insurance representatives for the basic supplies I needed to live. I came from a culture of fighting, so when I went to the doctor in Spain for the first time I was prepared for battle. Instead I encountered a system that found the idea of not taking care of me barbaric. I got the appointments and the supplies I needed immediately, at no extra cost, with no questions asked. I walked out of the health clinic and felt a strange mixture of disbelief and gratitude.

I’ve now used Spanish public healthcare for a year and I still experience that sense of disbelief every time I walk into an office and walk out with everything I need. No one calls me looking for money. No surprise bills show up in my mailbox. It is still difficult and counter-intuitive for me to not ask my doctor if my insulin and pump supplies are really included in my health plan. When I leave the office, I still get the urge to hug everyone I see on the street and to give every last cent I have to this system that has given me something I never felt in the United States: security.

Sure, things are different here. They’re rougher around the edges sometimes. When I go into the health clinic for blood work, there’s no system to know when its my turn. “Who’s the last in line?” I have to call out to the room, which is usually full by 8AM. Sometimes there are Spaniards waving around tubes of their own urine: “Can you take this?” they yell at the lab techs, “I’m gonna be late for work!” Sure, my primary care doctor could stand to work on his bedside manner and one might argue that the ticket systems and bare-bones waiting room decor at specialists’ offices are impersonal and unwelcoming. I’d argue that inaccessibility is more unwelcoming. I’d trade the ambiance fountains and comfortable recliners at my Philadelphia waiting room in a heartbeat if it meant that everyone who needed to access medical care, could.

Six months have passed since that election night and I still watch from afar in disbelief as politicians in my country vote to roll back legislation that protects people with pre-existing conditions. I feel anger and shame when I read stories about patients with diabetes who for economic reasons are unable to access the very non-optional medicines and education they need to live. Granted, I have a personal interest in the topic. My family, my friends, and maybe my future are in the United States. But every living, breathing human, healthy or otherwise, should have an interest in healthcare. Congressman Joe Kennedy’s response to the recent approval of the AHCA in the House of Representatives illuminates that:

“…every single one of us, one day, will be brought to our knees by a diagnosis we didn’t expect, a phone call we can’t imagine, and a loss we cannot endure.

So we take care of each other. Because, but for the grace of God there go I one day. And we hope that we will be shown that mercy too. It is the ultimate test of the character of this country confronting our chamber today — not the power we give the strong, but the strength in which we embrace the weak.”

Policy affects all of our lives and there is perhaps no population that understands that better than those who are in need. My experience is peculiar and privileged. I come from the richest nation in the world and yet I am still surprised and humbled to feel human in a healthcare system. I have America and a fortunate but altogether chance set of circumstances to thank for my education and the life I lead today, but I have Spain to thank for the relief I feel in knowing that my life and my misfortunes are not for profit. Spain’s system is far from flawless. It has its own unique challenges to face, but it is right in one thing: its humanity. I hope that, with every voice and every story shared, we can get closer to that in the United States.

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10 thoughts on “The Cost of Chronic Illness: Two Worlds and Two Kinds of Disbelief”

  1. It’s interesting to hear a little bit about Spain’s healthcare! Thanks for sharing. I’m in the US and have mainly read about US, Australia, UK and Canada, so it was interesting to read your post. I am still shocked by the election results. I didn’t stay up late, I went to bed thinking we would have our first female president.

    Like

  2. I really appreciate your post because I feel like you understand both worlds. Thank you for sharing your insights with us. And I agree, we don’t need the pretty decor, we need affordability.

    Like

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