For all but the luckiest Americans, there will come a time when you realize that the health-care system as it stands — the most expensive in the world — isn’t working the way we were told it would, or the way we may have expected it to, when we were young. Health-care-related GoFundMes have become ubiquitous, and an estimated 530,000 families per year turn to bankruptcy in response to medical bills — the leading cause of bankruptcy among Americans by far. Attempting to keep ourselves and our families healthy is, for many of us, making (or keeping) us poor.
Many (if not most) of the problems with our health-care system are economic — paradoxically, only when you have enough money for the best insurance are you able to avoid the most expensive bills. When we describe health care as “broken,” we mean that it’s inaccessible. Much of access has to do with money, but it also has to do with information — who can get it, and how it is (or isn’t) communicated. Below, we share stories from women who’ve experienced devastating (but not uncommon) encounters with the health-care system at every level: insurance companies, debt collectors, emergency rooms, and more.
I Was Kicked Off Disability for Smiling on Social Media
“After my podcast, Another Round, ended its run at BuzzFeed, I decided that I was immediately going to go on disability. I slowly began taking care of myself; I stuck with my therapy and psychiatry appointments, did things that were difficult for me, and practiced the near-impossible task of being nice to myself. Eventually, my short-term disability was up, so I applied for long-term disability, as neither of my doctors believed that I wasn’t ready to go back to work. They denied me. I appealed.
“The appeal process was overwhelming and daunting. I had to write a letter of appeal explaining why I should be granted long-term disability, thinking ‘My doctors say no’ should be enough. But it wasn’t. They made ridiculous and confusing claims, telling me that my condition both had and had not changed. I had awful, horrible, dehumanizing conversations with [insurance] employees about personal things, like how often I showered and brushed my teeth, and if I’d ever been sexually assaulted. The most outrageous claim, though, was that because I’d posted some pictures of me smiling on vacation and at a friend’s wedding on social media, I was fine and didn’t need more time to get my shit together.
“I explained that I went on vacation and pushed to go to to that wedding because my doctors told me to. That was the entire point of me getting help anyway, to be able to do those things again, and part of that process is forcing yourself to do things. And most important, you cannot see signs of an invisible illness. It’s invisible. You can’t look at some pictures or some tweets (I tweeted that I wanted to start a consulting firm and they held that against me, too) and tell how someone with a mood disorder is doing, where they are in their recovery. Health-insurance companies are either extremely out of touch with today’s methods of communication, know absolutely nothing about invisible illnesses, or both.” — Tracy Clayton
One Emergency Medical Test Cost Me $16,000
“In my freshman year of college, I had to have some emergency testing done, and my mom showed me the medical bills, and for one test it was $16,000. I was diagnosed with Marfan syndrome, which is a rare genetic disorder of the connective tissue, when I was 8. By the time I was 19, there were many medical bills stacked up. My mom showed me what she was still trying to pay off from when I was younger, and she didn’t finish paying off my medical bills until after I had two children, a year or two before she passed away.” — Maya
The ER Didn’t Take My Daughter’s Psychiatric Issue Seriously
“When my daughter was 15, she had a grand-mal seizure, her first. We had her transported to a hospital, and they were wonderful to her. Everyone treated her very well — we got to the hospital, they stabilized her, set her up with a pediatric neurologist, and transported her to a trauma hospital. They took terrific care of her, and she was able to come home much later that day.
“But she kept having seizures, so they gave her this drug called Kepra. It’s kind of the go-to drug for pediatric epilepsy, and it seemed to be controlling her seizures. What they didn’t tell us is that one of the side effects is that you can have a psychotic reaction. She started to get really agitated and say the same thing over and over and over again. She wouldn’t sleep. She became violent. She tried to kill our cat. She was 15, she was maybe 100 pounds, and we couldn’t restrain her. It got dangerous.
“Finally, I got a doctor on the phone who said we should stop giving her the Kepra. We called an ambulance, they heard her screaming in the background, and they said they wanted to warn us they’d have to send a sheriff’s deputy. At the time, there were two local hospitals, and I intentionally brought her back to the one that treated her seizures, because they were so good to her and they were familiar with her. When we brought her back, and she was being treated for a psychological issue, they wanted nothing to do with her. They insisted it was a behavior issue. I said no, she’s 15, she’s never had a behavior issue. They refused to accept it. You go on the website for Kepra, and it says this is one of the possible side effects, but they would not accept that. I have a friend who’s an ER nurse in Boston, and she said ERs have a name for that: GOMER. It means ‘Get Out of My ER.’
“I sort of cracked after 48 hours of no sleep, and I said, ‘I’m going to take her, I’m going to sit in the waiting room, and if she starts to get violent, I assume someone will care. And if she has a seizure, I assume someone will help her.’ Then, magically, there was a space available for her. She was treated horrifically — the same patient, the same problem — maybe six weeks apart, because the issue was psychiatric. I walked out of that hospital thinking, Thank God I don’t have a daughter with a mental illness, because that would be her entire life. Nobody wants to help you. Nobody wants their kid to have seizures, but if I had to choose between the two, I would take seizures over mental illness.” — Jennifer
My Son’s Birth Cost Over Half a Million Dollars
“My son was born before the ACA was passed. When kids are born, they’re covered by their parents’ policy for 30 days. I was a university student at the time working on a graduate degree, and the policy had a million-dollar lifetime payout, which makes sense to a student, when you look at it on the surface. Then my son was born at 24 weeks, so he reached his million-dollar max payout before he was 10 days old. He was born at 10:30 at night, and that first hour and a half, that first day’s bill, was $526,000. I knew a lot of that was covered by insurance, but insurance didn’t pay more than a million dollars. Luckily, because I was a student, I was poor enough that he ended up on Medicaid.” — Lisa
It Took Me Nine Months to Get My IUD Bill Cleared
“I worked for a large medical system promoting the safety, effectiveness, and availability of the IUD and contraceptive implant. I slept and breathed the language of increasing access to contraception in the U.S. and my state in particular (New York).
“After a while at this job, I decided to get an IUD for myself. My employee handbook stated that all health plans complied with the ACA, meaning there would be no out-of-pocket costs associated with any contraception-related appointments. However, my bill for the routine IUD-insertion follow-up showed zero percent coverage. I reached out to the doctor’s office to make sure they used the correct codes, which I only know about because I think about them every day for work. I hoped they would verify and get in touch with my insurance — that it would all go down as a misunderstanding. But the insurance company doubled down on not covering the appointment. They claimed that since the language on the bill stated ‘office visit’ that it wasn’t contraception-related, even though the only billing code entered at the visit was ‘IUD follow-up’!
“All the while, I hadn’t paid the bill, because I knew the charge was incorrect. Since my doctor worked for the same medical system I did, I ended up receiving a debt-collection notification from my own employer. After nine months of battle with the insurance company, and the involvement of my employer’s benefits department, the charge was finally cleared. I was an expert on this topic and I had that difficult of a time getting the coverage I was entitled to by law. There is no way other folks would know to do what I did — or have the patience for it. I am so grateful to the National Women’s Law Center, which has a tool kit for people in my situation.” — Sara
My Ambulance Cost $4,000
“When I had a terrible stomach bug last year and couldn’t stop vomiting, I took an ambulance to the hospital. They gave me an IV, some strong anti-nausea meds, and a vanilla milkshake (I’d been vomiting for hours, so I was very dehydrated), and a few hours later, I was discharged. They charged me over $4,000 (and I have health insurance!) just for the ambulance ride! It shouldn’t be like this. $4,000 for an ambulance ride is ridiculous!” — Madeline
I Was Billed for Anesthesia I Declined
“I was diagnosed with HPV and precancerous cells on my cervix, for which my OB-GYN recommended a type of biopsy called a colposcopy as well as a procedure called cryotherapy to freeze off the irregular cells. I later found that for someone of my age and health background, it was an aggressive treatment plan, but you don’t hear ‘precancer’ and think, You know what? I’ll take my chances!
“When I went in for the procedure, they asked if I wanted anesthesia, which I knew wasn’t covered by my insurance. I declined and decided to just grit my teeth and get through it. The anesthesiologist stayed in the room anyway ‘just in case I changed my mind.’ It was definitely painful, but the $1,000 out-of-pocket that it would have cost me, a fledgling New Yorker making only $40K at an entry-level advertising job, would have been more painful. Trust me.
“A few months later, I got a phone call from a debt-collections agency that sent me completely into a panic. When I asked what the debt was for, I was told that the anesthesiologist’s presence in the room meant she was still billing the doctor for her time, and so they were still billing me. But instead of sending me any notice of this, calling me directly, or mentioning it during one of my many follow-up visits, they sent the amount not covered by insurance straight to collections — which caused me to immediately fear for not only my precancerous cervix and my bank account, but now my credit score’s future as well.
“I went into the doctor’s office to inquire about the situation and tearfully told them I did not have $1,000 to pay for anesthesia I didn’t even have — anesthesia I declined in order to avoid this charge in the first place. Through my frustration and tears, the practice manager said, “Just pay us $300 and this will be settled.” As though after assessing me for ten minutes, she knew she could get 300 bucks out of me but never a grand, so she’d just take what she could get?” — Jenna
Insurance Hasn’t Saved Me From Extreme Health Stress
“I felt so damn independent when I got my very first job and it came with health insurance. I was 22 and I was taking responsibility for my own health! I never realized how much time that would mean crying on the phone to my insurance company to cover diabetes medication. I have cried on the phone with my insurance company countless times since then!” — Maris Kreizman