An Open Letter Healthcare.Gov: I Can’t Afford To Be Sick


The other day, I got several letters in the mail. One was from the healthcare marketplace, reminding me that enrollment for 2017 coverage begins on November 1st. The rest were medical bills, some of which are about to go to collections, that I can’t pay for. This isn’t new to me. When I first got sick back in 2010, I wasn’t insured at all. I have so much outstanding medical debt that subsequently went to collections that I’ll probably never be able to get loans for school, a house, a car, or anything else. My credit is under 600, and I don’t think it’s ever actually been over 600. I didn’t even have enough time to build credit — I was only 19 years old when I got sick.

This is the reality of the United States healthcare system, and I’m certainly not the only person you know who is struggling with it. Although I pay a paltry $83 premium each month for my marketplace-purchased insurance, many pay far more that that, even with tax credits and subsidies.

I’m actually thankful to have the option of buying insurance through the marketplace at all. It’s the only reason I was able to become self-employed. Prior to being able to partake in it, I was struggling to hang on in the traditional workforce because I needed insurance coverage. I worked purely to get healthcare, and that’s what many people do. But the problems with the U.S. healthcare system and insurance coverage exist regardless of whether you buy it yourself or get it through an employer.

When I worked full time with benefits at a hospital, I was in debt to that hospital because I had had some imaging studies done in the emergency room. It turns out that the radiology department was actually contracted out to a third-party, so it wasn’t even covered by the insurance that hospital employees had. An in-hospital service was out-of-network.

This time around, being self-employed, I tried to get adequate coverage for what I know I’ll need. I have chronic illnesses that require doctor’s visits, medications, etc. One of my prescriptions would cost me $1,500 to fill if I didn’t have insurance. With it, my co-pay is a few hundred dollars. I try to make the drug last as long as possible, which means that I don’t always take it when I should. If I can stand to suffer, I will, because I’ll save money.

This is an exhausting way to live. I decide everyday how much I can tolerate being sick. But after this last round of medical bills, coming at a time when work is slow, my book is transitioning into the next phase, and winter is coming — well, the truth is this: I can no longer afford to be sick.

One reason it’s so much money this time around is that my doctor has ordered tests, referred me to a specialist, and started me on new medications because she suspects that I have multiple sclerosis. I don’t see the neurologist for another few weeks, even though I called her office to make an appointment in May. So I’ve spent the last few months having labs, MRIs, and trying meds (like Adderall) to try to get some answers and treat symptoms.

I have insurance, but I still got thousands of dollars in bills that “I’m responsible for,” — which always insults me, frankly. They say, right at the bottom of the statement: “patient is responsible” — as though I asked for this, as though it’s my fault. As though I ordered the MRI, the chem panel, the prescription drugs. I wasn’t responsible for that, and if it hadn’t been down to ruling out a stroke or a brain tumor, I wouldn’t have had them at all.

My premium will probably go up, like everyone else’s. That’s the word on the street from the Obama administration. And that I do feel responsible for. You know why the costs are rising? Why so many insurers dropped out? Because no one accounted for just how many sick people needed coverage, and how much coverage they actually needed. People like me.

The total number of insurers participating will go from 232 this year to 167 in 2017, which means a lot of people are going to have to switch plans. My insurer hasn’t sent me a letter, so I assume they’re still participating. But I’m bracing myself for a more expensive monthly premium. I don’t know how I’ll afford it.

I recently started taking dance classes again. Before I got sick, I was studying dance in New York. I loved it. I mean, I was no Twyla Tharp but I loved it. When I got sick I stopped dancing, but when my doctor sat down and talked with me about my neurological symptoms, about the trouble with my arms and legs, she said that if it does turn out to be progressive the best thing I can do now is strengthen myself physically and keep myself intellectually stimulated. Dance was always exactly that.

I started taking ballroom lessons about a month ago and I fell in love with dance again. I fell in love with myself again, and was slowly learning to love my body. This new body that I’d never danced in before. Ballroom isn’t an easy style, and partner dancing is very different from what I knew, but I didn’t immediately fail at it. In fact, I was doing pretty well. If I could afford to have lessons a few times a week, I would have been ready to start competing in the spring. Can you imagine? What a comeback.

There’s no way I can afford it now, and that’s what really gutted me. Because it was something actionable I was doing in support of my health, it was doctor-recommended, 9 out of 10 dentists, mom’s love it, approved.

I was being proactive about my health, but I can’t do that now because I have to pay for healthcare services that I received months ago, that provided more questions than answers, and that had I forgone them, would have been a gamble on my life — what if it had been a stroke? I had reason to think that was possible: several months before I’d had shingles (at 24 years old) and there is some research that points to a connection. I’ve had major infections before that lingered, unchecked and untreated, for years. I have permanent damage to multiple organs because of that.

A paratubal cyst displaced my ovary and wrung my fallopian tube like a washcloth, torquing it into my lower back. No doctor ever saw it on an ultrasound. When the surgeon saw it, she couldn’t believe they’d missed it. But she didn’t remove it, because it was more complex than she was comfortable handling. She didn’t biopsy the fluid or the tissue. She wrapped it, and my fallopian tube, in surgical mesh. At my post-op, she told me she didn’t know if it would come back. It did.

18 months later, still sick, I pushed for more tests, for doctors to take my pain seriously, because I was terrified that I would die. As it turned out, my appendix had been infected for two years and I finally got a surgeon to do an exploratory surgery to confirm what I told him was chronic appendicitis, probably from endometriosis. He was shocked to discover I’d been right all along. He found exactly what I said he would — and worse. And because so much time had elapsed, the damage was done. He admitted he had no idea if there would be longterm consequences (there were), but if the infection had seeped out a little more, if the mass had ruptured, I would have died.

The debt I accrued from saving my own life means that I can’t go back to college, I can’t own a home, I can’t even get a loan to consolidate my debt.

I’m writing a book about all this — but it won’t help me. It can’t. There is no help for me. And every time I’d go to the doctor’s office, I was too scared of dying to take the risk of not having the test, of not scheduling the surgery, of not trying the medication. Each time, I was right, and had I done nothing, if I’d let the medical profession convince me I was depressed, sad, hysterical, a hypochondriac, I’d probably be dead.

Or at the very least, worse off than I am now.

Making decisions about your healthcare is always a risk/benefit analysis. I learned about this when I worked in a hospital and watched patients and their families make these decisions every day. Often, it came down not to life, to health — but cost. The cost of being sick vs. the cost of being well.

The cost of living and the cost of dying.

Dying’s cheaper for you, if not for your family. But being chronically ill? It compounds. It gets more and more expensive, and maybe if you’re lucky you live long enough for research to catch up, and there are treatments that improve your quality of life. For some, those treatments never come.

For some, they come, but they’re too expensive. Being well becomes a privilege of those who can afford it. The rest of us stay sick, until we can’t afford to be sick anymore.

Then what? What do we do then?

We take the risk.

Abby Norman is a writer. She’s currently working on a memoir for Nation Books. Her work has been featured in The Rumpus, The Establishment, Cosmopolitan, Seventeen Magazine, The Independent, Quartz, Bustle and others. She lives in New England with her dog, Whimsy, and wishes Gilda Radner would haunt her apartment. She’s represented by Tisse Takagi in New York City.

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