In the US Health Care System, You’re Not a Patient. You’re a Consumer

I keep falling asleep while I’m waiting for the doctor. It took me months to get this appointment with the sty specialist, and then it was delayed another month because the doctor just had a baby. The red lumps on my eyes have been leaking pus for half a year, but it’s fine. It was noble to push back appointments during the pandemic, and catching up on them now is a triumph.

It’ll look bad, though, if I’m sleeping when he comes in. I think about congratulating him on the new baby. How it would maybe catch him off guard and set up a friendly rapport. Make me seem more than anonymous lid-ooze.

I chicken out and greet him normally. He clocks my red, scaly elbows and asks, “Do you have psoriasis?”

Uh, do you have a dermatology degree?

“Yes.” This is not the rapport I wanted.

Then he looks at my eyes. Diagnosis: “You have a lot of sties.”

The treatment is a five-point regimen: a heat compress, a spray, an ointment, a lid rinse, and an oral medication.

“Okay,” I nod, as if I am a person who can totally nail this.

But a good patient doesn’t just nod. A good patient self-advocates, asks questions. She’s proactive and assertive—necessary qualities to navigate a health care system that is not designed to help you.

“How often?” I ask, about the compress.

“As often as you can,” he shrugs.

The sty regimen will be added to my daily eye drops and nightly ointment for my recurrent corneal erosion (a thing where your eye erodes) and my twice-a-day-with-food oral medication and topical creams that keep my psoriatic skin from flaking over all the furniture.

As an adult I developed a variety of chronic health conditions—psoriasis, rosacea, allergy attacks, the cornea thing, and other eyesores—that require constant upkeep, or else things get very gross. But I suck at upkeep and consistency, so at any given time, at least one cog in the machine is missing. The doctor saw evidence of my failure in my elbows, their livid blotches plated with dead skin. Should have mentioned the newborn.

I think about the ENT specialist I visited a month before the sty guy. I took my mask off and the doctor recoiled. “Whoa.” (He actually said “whoa.”) “What’s with your nose?”

The signs of my sin, writ on my flesh.

It was red from rosacea, which I told him, in my calm professional voice that has never known vanity and has never been offended, and he prescribed three allergy medications and a spray. Incidentally, rosacea contributes to recurring sties.

Good patients are calm in the face of their maladies and take all their medications at the right times. Also, they don’t take too many medications, because they understand health isn’t just uncritically guzzling Big Pharma. They do yoga and go to therapy instead.

It is hard to talk about health in the United States without also talking about virtue.

The sty doctor shines a harsh light into my face and injects both my eyelids with steroids. Needles in my eyes, this is fine. When it’s over, I have to press gauze upon my bloodied eyes. I want more information from the doctor, but I cannot see anything or use my hands, so I’m at a strategic disadvantage. He scrawls a prescription. Of one item, he says getting coverage is a hassle, but it’s okay: “You can buy it on Amazon.”

Uh, can I though?

I do not want to buy my treatment on Amazon, first because I am a saint (see: not buying from Amazon; bleeding from eyes). Also because it is bullshit. But in a health system so fucked that doctors outsource it to Bezos, we’re not patients, we’re consumers. With that role comes the responsibilities of savvy, ethical decision-making—a strange burden for patients seeking care. The right thing to do would be to insist on the hassle with the insurance.

I nod and thank the doctor and stagger out of the office blindfolded by gauze. I will probably just not get the medicine at all.

*

It is hard to talk about health in the United States without also talking about virtue. Puritan notions that ailments and deformities stem from sin have too long warped American attitudes toward sickness. Progressive discourse attempts to disentangle the two concepts. We know the for-profit health care system is shameful; we know “wellness” is mostly a scam. I know my ocular rosacea is not because I am unclean, and the scales on my arms and legs are not punishment for name-searching myself on Twitter.

But still, we need our prescriptions filled. And what should we call the range of logistical, interpersonal, and emotional skills this task requires, if not virtues? Without wealth or divine purity, this is how we keep our skin on and eyes open. Are you organized enough to stick to your regimen? Self-possessed enough to hold your own with your doctor? Courteous and yet dogged enough to engage with the pharmacy, the insurance company, and a network of physicians? Will you file the appeal, make the follow-up call, track down the form? A good patient is an administrative assistant, a diplomat, and an investigative journalist.

A good patient takes care of herself.

As I sit in my car waiting for the eye blood to dry, a feeling of unease creeps in. This was supposed to be my triumph. But no, it’s fine. The prescription in my hand means I succeeded.

That same week I book a flu shot, because I am on a virtuous streak. “Protect the vulnerable! Stop the spread!” the radio ads chime. It’s my gift to society, not spreading the flu. And as I understand, my insurance covers flu shots. I’m sure I remember reading that.

My appointment is scheduled for the one day I have off between my two part-time jobs, neither of which provide any health benefits, and on that day I have an allergy attack. But there are worse fluids that could soil the inside of my mask, for example, eye blood. My roommate and close friend, G, came with me to get her flu shot, having been persuaded by my arguments for community service. I drop off my new prescriptions, and it just so happens that the line for vaccines is far back enough that we’re standing directly in front of the eye aisle (eyesle).

Flu shot season coincides with Covid booster shot season this year. The line is long. A woman shouts after her elderly parents, who have wandered away from the vaccine queue. Other customers call back their location in the store, like a weird game of Silver Alert Marco Polo.

I grab about seventy-five-dollars’ worth of sty-prevention products in the eyesle. G offers to help cover it with her Health Savings Account (suck it, Amazon!!!), and off I go to the counter to pick up my skin-med refills and my brand-new eye meds. It turns out the prices for my skin meds have mysteriously gone up again and will now total more than three hundred dollars, and I can’t afford them so I just get the eye ones, which run me another forty dollars, and I start crying, which triggers my allergies, and a fountain of snot jets into my mask.

They call my name for the flu shot.

There is a thirty-five-dollar copay.

How can this be? I have insurance. I am here for society.

They find a coupon and knock it down to twenty-five dollars.

I thank them, weeping into my snot mask.

They find a coupon. This is fine. Meanwhile G is pushed back in the line because the online appointment system has lost her booking. The woman with elderly parents grows shrill.

We scheme ways to obtain the drugs by other means. We have a friend married to a military doctor; maybe she can get them cheap. My girlfriend’s mom works at a dermatologist’s office; could she come by some free samples? A good patient is resourceful.

“Who needs eyes?” I keep saying, laughing. “Who needs skin?”

G does not laugh.

Managing chronic conditions are like paying rent to your body. Psoriasis therapy is a booming industry, valued at $8.48 billion in North America as of 2019. Streaming TV ads promote drugs whose names invoke dystopian gods: “Skyrizi,” “Tremfaya.” According to the Journal of the American Medical Association, the costs of psoriasis medication rose significantly in the US, in some cases more than doubling, between 2009 and 2019.

According to Wikipedia, daily salt baths in the Dead Sea for four weeks are a “cost-effective” way to treat psoriasis.

If I were smart, I would not have gotten an MFA and an autoimmune disorder at the same time.

As those of us with chronic conditions are advised to do, I chose my health plan because of its low prescription drug costs—five dollars for most drugs, when I first signed up. But tiers and prices change, and I am always caught off guard. On some level I know the system is designed to break me down, but I feel guilty because I am good at letting it. If I were savvier, better on the phone, better with numbers and budgets and plans, this would not happen to me. If I were smart, I would not have gotten an MFA and an autoimmune disorder at the same time.

In the eyesle, I ask G, “Which is worse to contemplate, your helplessness or your responsibility?”

“Ugh,” she says, “I don’t want to contemplate that.”

This suggests the answer is responsibility.

Researching my insurance plan’s drug list, I learn that one of my medicines comes in a “cream” (eighty-five dollars) but also a “solution” (five dollars). My prescription only applies to the former. Researching this involved navigating a 130-page PDF with no search function.

Once, on the phone with the pharmacy, they requested my “ID number” and I asked what number that was. She said, “your pharmacy ID number.” I asked if that was the same as the member ID number on my insurance card.

She said: “Sometimes it is, sometimes it isn’t.”

A good patient is always nice on the phone. Engaging, polite, kind—but also inquisitive, insistent, determined. If I’m all these things in the right combination, then I’ll solve the riddle of the sphinx of CVS. Above all I mustn’t cry. We can escape the never-ending eyesle together, me and this person who is just doing their job, who is just trying to help, who probably can tell I let my prescriptions lapse because I was too scared to pick up the phone last month.

I tell G I feel like I’m stuck in a video game. I am trying to traverse a gridless city. I am trying to find a solution, but all that’s available are eighty-five-dollar creams.

*

G finally gets her flu shot. We flee the pharmacy. But it takes me months before I open the paper bags that hold my new medicines. I bled through the eyes to get them, but I can’t bear starting a routine I know I’ll fail.

Is this too much angst for psoriasis and chronic sties? This is the United States of Medical GoFundMes; it could be worse, it could be so much worse. It’s only an eyesore, after all. When I am on the phone crying to the lady who works customer service at the pharmacy, I feel like I am asking for youth-enhancing skin cream made from snails and the tears of French babies.

And yet there is a whole world—literal existing countries—where going to the pharmacy is not a Beckett play.

I know we live in a bad society, that we are oppressed by a system that prizes corporate profits over health. Still. It is one thing to say “getting sick is not a personal failure.” It is hard to say the same of “being intimidated by filling in forms.”

A good patient is brave.

There is a thing that happens when you talk in public about a health condition you are managing with doctors. It is the thing where legions of online helpers pipe in with dietary advice and have you heard about Reiki and my cousin tried acupuncture and and and . . . ? And this is the worst thing, it is Very Bad! But I am ready for that thing. I am ready to believe fish oil and legumes and crystals will fix things. I’m ready to be a bad patient. I want to know what you’ve tried and what will help and what helped your cousin but only—this caveat is very important—if it is extremely cheap.

The cheapest, most intoxicating drug is “pretending it doesn’t exist.”

I can go a long time with fucked-up skin and fucked-up eyes. Protestants believe disease is a mark of sin, but raised Catholic, I know that the more the flesh is mortified, the more I will be venerated. Blessed are the porous and peeling, the disorganized, the inefficient, we sinners. I’m not religious, but I can still choose martyrdom. Let my path to redemption be one of lesions and pus. Let go of modern virtues, of “self-care,” of “adulting.”

Of course, it shouldn’t have to be about virtue at all. Matters of health and finances should be untethered from shame, and we should grant ourselves the same grace we show others who struggle with difficult systems. But that sounds lofty and virtuous too, and besides, the shame is so visceral. It leaks out of my eyes and sloughs off my limbs, reminding me that I could be pretty, and painless, if I just tried a little harder.

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