Author’s Note: This was written several years ago for an assignment in graduate school. I’ve lost track of the medical bills, doctor appointments, emergency room and urgent care visits, and medications since then, but the sentiment still remains and feels as relevant as ever.
$6,000.
That’s how much the out of pocket for my medical bills from the last 27 months have cost as I’ve jumped from doctor to doctor, specialist to specialist, and diagnostic test to diagnostic test. That doesn’t include the almost $100 a month I spend on medications; the hundreds of dollars I’ve spent on supplements; medical garments like compression socks; expensive, pharmaceutical-grade electrolyte formulas; the heated blankets; ice packs; topical pain creams; over-the-counter medications; or my wheelchair—the wheelchair I bought secondhand and doesn’t even fit me properly. It doesn’t include the tests or prescriptions I’ve had to turn down because the cost was too far out of budget. It doesn’t count the number of nights I’ve laid in bed, or curled up on the couch, or clung to the toilet wondering if I needed to go to the ER or if I could wait until morning to visit an urgent care so it wouldn’t be quite so expensive. It doesn’t include the money I’ve lost by having to cut my work hours in half. It doesn’t include the eleven months of desperately trying to pretend I wasn’t getting worse and didn’t need to go see more doctors after the first ten months of perpetual appointments. I already had one diagnosis, who cares if it was obvious there was more going on than we originally thought? It was too expensive.
Being sick is expensive.
I’m lucky. I had a primary and secondary insurance for the first year, so it cut down the cost of what I would have paid significantly, though there’s still a floating roughly $1,600 of medical bills stuck somewhere in insurance bureaucracy purgatory. I pray daily that it doesn’t hit all at once.
My husband and I elected to sign up for a low premium, high deductible health insurance plan to get access to a health savings account (HSA) before I got sick. We’ve not moved it over, even though our deductible is now over $5,000 a year. But at least we have—had, it’s mostly gone now—several thousand in the HSA. That’s helped curb the blow of each of my 29 appointments I’ve had in just the last 6 months.
I have three more this week.
I’m lucky. I can go see these doctors. They believe me even though I have chronic illnesses that are often highly stigmatized and poorly researched. They believe me even though I’m a young woman with a history of mild anxiety—the two symptoms needed to be dismissed as hysterical.
They believe me.
They believe me.
They believe me.
At least that’s what I told myself last night while nearing a panic attack about having even more appointments and medical bills this week.
I’ve joined multiple support groups since getting sick. I’m connected with disabled and chronically ill people all over the world. I’ve seen people with my same diagnoses, but with thousands upon thousands of dollars in medical debt because they needed just a singular emergency surgery just to be able to keep food in their body. I have a friend right now who lost their job this summer because of their disease. They’ve since had a massive symptom flare-up that they couldn’t seek care for until they got their Medicaid application approved. Now the doctors are passing around words like “major infection” and “how was this not caught sooner?” But how were they supposed to afford to catch it before?
One of my friends says most of their conditions are genetic, but they’re the first to know because their family couldn’t afford to go to the doctor. My friend can’t afford it either, but they can’t afford to not go either.
I have friends who can’t afford to miss work to go to doctor’s appointments or take sick leave, but because they can’t afford to miss work, they just get worse. This means they’re eventually forced to miss work for longer, which means they can’t afford the medical care they need. Or they’ll have to sacrifice in other places—few of us can afford to eat enough calories from fresh produce and lean meats every day when you have hundreds of thousands of dollars in medical bills. Few can afford hundreds of thousands of dollars in medical bills when you can barely afford to feed yourself enough calories from fresh produce and lean meats.
When you’re this sick, you can’t afford the energy required to make your own healthy food anyway—not when it takes everything in you to get out of bed just to go to the bathroom.
I have dozens of friends who can only hope their self-diagnosis is correct, or that the over-the-counter and lifestyle change treatments they found online are enough to help because they can’t afford to see a doctor right now, let alone the tests they need for a formal diagnosis.
They just hope it’s not something worse.
I’m lucky. I’m in a clinical study for my conditions. They’ve paid for thousands of dollars in tests and will likely pay for even more. They’ve not brought up anything new, but at least they are tests my doctors wanted me to get anyway.
I’m lucky. I can actually get to my appointments, and I have internet so I can do telehealth appointments when needed.
I’m lucky I can sort of afford this because a lot of people can’t at all. I’m lucky I have a job that’s willing to be flexible with me because a lot of people would have been fired by now. I’m lucky my husband works full time, because otherwise we’d be in a lot of trouble. I’m lucky I have a husband who believes me because I know a lot of people have spouses who don’t.
I’m lucky at least my medications are in the range of $10-200, instead of the $1,000+ range my friends with conditions like diabetes have to pay for their life-saving medicines before their insurance kicks in. A family member once had to ration their insulin to survive while their pharmacy went into a drawn-out battle with their insurance. Out of pocket wasn’t an option at the time. They almost died. I’m lucky I won’t die without my medicine.
I’m lucky because it’s “only” $6,000.
And I’m lucky because we have an income that’s allowed us to afford even that much.
I’m lucky.
I’m lucky.
I’m lucky.
I don’t feel very lucky.
