It started with the spoiled meat. My healthcare journey, I mean. As I was cooking dinner one night, my spouse hollered from the other room, “What literally smells like feces?” Come to find out, the sausage I was browning had gone bad, and I could not smell it.

I’d always known I had a poor sense of smell. Whenever people would say something smelled bad, I would nod along as if I, too, could tell (but I usually couldn’t). On the flip side, I also couldn’t enjoy good smells, either.

When I had a cold the previous fall, my left nostril became completely useless, and didn’t really improve even once the rest of the symptoms had passed. “I should probably go see an ENT,” I thought. But it took the incident with the meat to convince me.

One uncomfortable nasal endoscopy later, my self-diagnosis of a nasal polyp was confirmed. In fact, the ENT’s response when she looked into my nose was, “Wow, that’s a HUGE polyp!” (Very reassuring to hear…not.) That was the beginning of one relatively healthy woman’s trek through the hellscape that is the American healthcare system.

I’ll pause here to say that everything ended well. In fact, everything proceeded well, too. There were no roadbumps along the way, no operating table disasters, no bills sent to collections. And yet, the whole thing felt like an ordeal, and gave me unbounded empathy for the people who have to deal with this shit when they are truly unwell, or alone, or living on the edge financially. I am in the unutterably privileged position of having good health insurance, a fiscal safety net, a job that is flexible with my hours and work location, no children or other dependents who need my time and need me to be well, and a supportive partner with a similarly flexible job and the ability to drive me around and take care of me.

Here’s a probably incomplete catalog of the appointments it took to get my situation sorted out:

  • An initial office visit to the ENT, including nasal endoscopy
  • A follow-up visit to see how the prescription steroids had affected my polyp
  • A CT scan (at a different doctor’s office) to map the inflammation in my sinuses
  • Another ENT visit to look at the CT scan and discuss next steps
  • An appointment to discuss details of the surgery
  • The surgery itself–an early-morning, half-day process, with the following day reserved for recovery
  • A one-week surgery follow-up including nasal endoscopy
  • A three-week surgery follow-up including nasal endoscopy
  • A two-month surgery follow-up, to discuss allergy testing
  • An appointment for allergy testing
  • A follow-up appointment to “read” the allergy test results
  • An appointment to test the allergen mixture
  • An appointment for my first allergy shots
  • An appointment for my second allergy shots
  • An appointment for my third allergy shots
  • An appointment for my fourth allergy shots, and to teach me how to give them at home

I’m now giving myself allergy shots once a week at home, and I had a six-month surgery follow-up scheduled at the beginning of the year. There were also multiple trips to various pharmacies for both prescriptions and over-the-counter supplies that I needed at points along the way.

Y’all, that’s a lot of dang appointments. And consider that each one is, say 45 minutes, at the very least, with an hour or so of travel time to get to the doctor’s office, and another 30 minutes or so to get to my work office or back home afterward. That’s hours and hours worth of time that someone working a part-time, hourly job likely wouldn’t have the flexibility to commit to for what was ultimately an elective surgery.

And not to mention the cost. As I said before, I have good health insurance, provided by my employer. I’ve chosen to carry the high-deductible plan, with an HSA that my employer deposits money into. My spouse and I keep the equivalent of our deductibles earmarked in savings. Last year, for maybe the first time in my life, I hit that deductible, about halfway through the year.

Because the ENT is considered a specialist, I didn’t pay a co-pay each time I visited. Instead, they would bill my insurance provider, and then send me a (paper) bill for what I actually owed. With the frequency I was visiting the office there for awhile, the bills would cross in the mail sometimes. I would go to pay my balance when I was there in person, but then receive a bill for what I was pretty sure I had just paid. Being the conscientious person that I am, I made several phone calls to figure out if I actually owed what was billed. This also took time, which I had the flexibility to do from my desk at work.

In addition to those charges for the office visits, each nasal endoscopy cost something, too. The CT scan cost money as well, that I paid to a different provider. And let’s talk about the bill for the surgery. My ENT’s office has a staff person whose entire job is to meet with patients before the surgery and go over what their financial responsibility will (probably) look like. She calls their insurance provider to talk it over, and then has a meeting with you in her office to go over the numbers. I paid a portion of what it was expected I would owe as a deposit. All of this was okay for me because we had that deductible’s worth of money saved, but it was a lot out of pocket!

So I paid the deposit, I had the surgery, and I knew I would owe some money, but it was unclear exactly how much that would be, when the bills would come, and to whom I would pay it!

Several months after the surgery, the bills finally started arriving. I owed money to the ENT for her services. I owed money to the surgery center. I owed money to the anesthesiologist. There may be others that I’m forgetting. And of course, there were multiple different third-party systems that I had to access to pay all of these.

Asynchronously from the paper bills, I would receive email notifications from my insurance provider that an explanation of benefits was available. This had numbers that corresponded in some way to the bills, but were not directly mappable.

The bills themselves were mind-boggling. There would be a column for the total cost (around $44,000 for the surgery alone), a column for the adjusted cost once my insurance was billed (something like $7,000), a column for what the insurance paid (something on the order of a few thousand dollars), and then a column for what I owed (around $700). The amount paid by insurance combined with the amount I owed did not actually match the amount of the adjusted cost, which itself was obviously a lot less than the initially quoted total cost.

There are entire associate’s degrees dedicated to learning how medical billing works in this country.

Once I hit my deductible of $1500, I had an additional $1500 to spend to hit my out of pocket maximum. I got there pretty quickly, too. At that point, I would occasionally still get a bill in the mail, but for $0–effectively just more paper to shred; existentially, a confusion to ponder over.

There are so many what ifs that I take away from this story.

  • What if…I had not been well enough to drive myself to the initial appointments, and had no one in my life to drive me, so had to either pay for a ride or spend the extra time it takes to navigate public transportation?
  • What if…my job didn’t allow for the hours I needed away from the office to go to all these appointments?
  • What if….I was living paycheck to paycheck and couldn’t afford the out of pocket maximum insurance required of me?
  • What if…I didn’t have a live-in partner to drive me to my surgery and then keep an eye on me as I recovered from the anesthesia? (He hollered up the stairs periodically, “Have you gotten up lately?” to make sure I was moving around like I was supposed to, to avoid blood clots.
  • What if…I had moved in the middle of all of this, and some of the paper bills got lost in the mail?
  • What if…I could only access the Internet from a public computer, making it that much harder to pay all of the bills online or do research about what was wrong with me?
  • What if…I couldn’t immediately pay the bills out of pocket, so they got sent to a payment plan or, worse, to collections, adding yet another layer of complexity and paperwork to getting them paid?

I am a relatively organized, highly educated, financially comfortable, married American citizen, with stable housing and a vehicle that I own. Given all of that privilege, navigating an elective surgery was eminently doable–more of an annoyance than an actual hardship. Given the same advantages, I can imagine that navigating all of this for an emergency surgery, or for a long-term illness, would be significantly more difficult because of the emotional strain and physical side effects, though still doable. But lacking that firm footing, I can barely fathom what it would be like trying to handle all of this.

I think the healthcare system in America is broken. My story shows it. I’m not a politician, and I’m not the one who can bring about systemic changes in any of these systems, but I can vote for the the people who will. And I can be understanding when I hear stories about healthcare related bankruptcies. I can have so much more sympathy when co-workers take time to deal with health issues, or to support family members with health issues. It’s easy to feel helpless, but I think my list of what ifs can give us some ideas.

  • What if…we make ourselves available to give rides to people in our lives dealing with health scares?
  • What if…we use our influence at our companies to protect the jobs of people needing time for appointments, phone calls, etc?
  • What if…we educate people about financial literacy and help them save to have a cushion for healthcare spending?
  • What if…we volunteer at hospitals or surgery centers to look out for people who are alone?
  • What if…we support places like our local libraries that are invaluable resources for people who need access to computers and the internet?
  • What if…we make noise about making Internet access a public good?

My story, which was hardly traumatic in the first place, has a happy ending. The bills are paid. I have a lot fewer doctor’s appointments on my calendar. I can smell now, and I can count on one hand the number of sinus headaches I’ve had since my polyps were removed and my deviated septum was repaired.

My spouse bought me a candle for Christmas last year, that I chose not to light until I knew I’d be able to smell it. We joke that it’s the most expensive gift he’s ever bought me: a $44,000 candle. And it sure smells awfully sweet.

Laura Lindeman

Laura Lindeman