'I Lost Everything': The Obscene Cost Of Being A Woman With A Chronic Health Problem


 
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By Ivana Rihter

Lee Edwards was driving home from work one day in 2005 when a blinding migraine struck out of nowhere. After the ear-splitting pain persisted for more than a month, the then-28-year-old knew something was seriously wrong, but the first doctor she saw prescribed Vicodin and offered next to nothing in the way of an explanation, she recalled. That was just the start of a frustrating pattern that would repeat itself over the next decade of Edwards' life.

Even after the migraine faded, it was followed by a steady combination of exhaustion, pain, and unexplained infections. Edwards, whose real name has been withheld to avoid possibly jeopardizing her disability benefits, barely had the energy to go through day-to-day life and was eventually offered a buyout package at the hospital where she worked as a therapist, she said. When she brought up her health in new job interviews and attempted to explain why she could not work full-time hours, she got passed over for other jobs, she added.

"I lost everything," she said. "My income, my ability to get another job to replace my income, [and] as soon as I lost my job, I obviously lost my insurance as well."

To date, Edwards said, she has seen roughly 30 doctors for medical complications across California, Arizona, and Louisiana, where she now lives with her husband. "Most of them just shrugged their shoulders. One blatantly called me a liar," she said. "They all said it was depression. Many of them only said depression."

The accumulated costs, physical and psychological, took a massive toll. But the financial tally is the one that reverberates most today. "In the end I racked up around $80,000 in medical and related credit card debt—some of it at over 20 percent interest," Edwards said. "In short, it ruined me financially."

Her case is brutal, but not uncommon. If tales of medical debt destroying peoples' lives are not exactly rare in the United States, women are often made to bear the brunt of it.

It's well established that women are more likely than men to delay or avoid medical care because of associated debt, and that younger people are more likely to accumulate medical debt than their elders. But women are also more likely to live with chronic pain. Autoimmune diseases affect approximately 8 percent of the population, but 78 percent of those affected are women, according to comprehensive data. Under the autoimmune umbrella are conditions like multiple sclerosis, lupus, Addison's disease, and rheumatoid arthritis. Women also have a greater propensity for chronic conditions like endometriosis, osteoporosis, and migraines. All of these ailments are associated with regular bouts of pain.

The majority of these conditions are also frequently misdiagnosed or missed entirely, which leaves young women—many of whom develop symptoms in their 20s or 30s—to bear the cost when they can least afford it. What can be a years-long struggle for answers may mean burning through cash and taking on mountains of medical debt. These women—who in addition to typical millennial problems like student loans and high rent costs have to contend with the gender pay gap—acutely understand the ways in which the U.S. medical system just isn't working due to the financial stress it puts on them every day.

"They are just starting their life, just gaining traction in their careers or just starting families," said Rhonda R. Voskuhl, director of the Multiple Sclerosis Program at UCLA's Brain Research Institute. "Many of these diseases affect a demographic that is otherwise healthy."

The cost of treatment aside, simply getting diagnosed can require years of doctors' appointments, specialist visits, and expensive testing. And then there are the incidental costs, like gas to and from appointments, travel to find specialists, and child care. For those with insurance, the co-pays, deductibles, and time off work can be trying enough. For people without insurance, the cash needed to get basic tests done means debt is often unavoidable.

One big factor is the sheer lack of clinical research in play. Male bodies have traditionally been used as a baseline in studies, in research, and in clinical trials, but female bodies react differently to medicine—and behave differently in medical crisis (case in point: women are more likely to have heart attack symptoms that are unrelated to chest pains, which makes them easier to miss). It was not until very recently that the medical community started including female humans and cells in clinical research.

"More women have Alzheimer's, more women have lupus, women are more likely to get MS, and it is so important to study sex differences," Voskuhl said. "Women are just not taken as seriously when they complain about things. [In the case of MS patients] it really took the MRI [for doctors] to take them seriously."

The mismanagement of chronic pain and autoimmune conditions is also rooted in antiquated ideas of women's pain being "hysterical" and "overdramatic." When women are routinely disbelieved or labeled as "drug seekers," the years it takes to come to an accurate diagnosis can lead to anxiety, depression, and debt.

"I had one doctor who never once spoke to me or looked me in the eye," Edwards recalled. "He spoke only to my husband, asked questions only of my husband, and when we left shook only my husband's hand. I might as well literally not have been in the room." Edwards said she was eventually diagnosed with endometriosis and

hypothyroidism, but not before incurring debt that will linger for years to come.

K.D. Chalk, 30, has been struggling with painful periods since her middle school years. When it finally got bad enough that she ended up in the hospital, she was met with the grim reality so many women of color experience in the ER: After hours of waiting with no medical help, Chalk begged for some kind of relief, but was not taken seriously, she said. She told the staff her pain levels were at a 10 out of 10, and the nurse offered her an ibuprofen. "It does make me wonder if me being an African American woman has made doctors slow to responding to my pain," Chalk, an actor and filmmaker based in Los Angeles, said. (Research suggests that this is a real phenomenon—doctors underestimate the pain of their Black patients.)

She made the decision to leave the hospital and find another one that could see her more quickly. This also meant going to one outside her insurance network, which she said cost $2,000. At the time, she was unemployed. After over a decade of pain and irregular periods, it wasn't until about two years ago that a doctor finally ordered an ultrasound. It showed she had endometriosis, a condition where tissue that normally lines the uterus grows outside of the organ and can cause painful cysts and scar tissue.

The average diagnosis for endometriosis takes between six and 10 years. According to the American College of Obstetricians and Gynecologists, one in 10 women of reproductive age are affected by this lifelong condition. "Many physicians often under-respond or even dismiss patients who bring up their symptoms," said Dr. Lora Liu, a gynecologic surgeon who specializes in endometriosis. Since there is no current cure for endometriosis, some women must spend money on daily pain management and long-term help like surgery. Chalk's first surgery cost her $15,000 with insurance and the outcome was nightmarish, she said, with the surgeon spending five hours operating, getting overwhelmed, and removing only one cyst (there were multiple). Chalk's left ovary and fallopian tube were also lesioned together, she said.

"Her only post surgery advice was to take birth control, and that I had six months to decide if I wanted to have kids or not. She never suggested having another surgeon fix what she couldn't finish," Chalk said. It took months to get an appointment with a new doctor and schedule yet another surgery. On top of the financial stress of pain management, the continued hospital visits and emergency room trips essentially cost Chalk a job at a restaurant chain in Santa Monica, she noted.

"[My bosses] responded that I needed to come into work anyway. That I needed to come in as soon as I left the hospital," she said. "They didn’t believe that I was going through chronic pain. Eventually I was taken off the schedule altogether, losing my health insurance."

Even for those with great insurance, the incidental costs of dealing with chronic conditions can still mount to the point of absurdity. Rachael Dickson, 31 of Springfield, Virginia, first noticed neck pain in high school. When she started seeing doctors about it in her early 20s, most chalked it up to stress, one even suggesting it must be anxiety or maybe an injury sustained from an abusive relationship (this was not the case). Dickson bought countless foam rollers, pillows, suction cups, and posture correctors, but nothing worked. All this gear in addition to the regular massages, chiropractors, and doctors' appointments cost thousands, and at the time she was interviewed this spring, Dickson was dealing with roughly $28,000 in bills just since 2018, she said.

"I am descended from Depression-era Oklahoma farmers—my family is really anti-debt," Dickson said. "The only reason I am getting close to paying off my medical debt was because my car was totaled and I put all $5,000 toward credit card debt. It was a blessing in disguise."

Dickson is a government attorney and has, by most standards, excellent coverage. What's more, her mother is a doctor. It still took her 10 years of daily pain before she got a diagnosis of osteoarthritis in her neck, which she now treats by getting arthritic nerves burned twice a year. To keep her finances organized, she and her husband have something they call the "spreadsheet of doom" that keeps track of all the bills Dickson is not able to split evenly due to her medical payments.

But if some women struggle to get diagnosed at all, others spend years—and thousands of dollars—treating the wrong disease.

When Chelsey Tucker woke up one morning in 2009 and could not see out of her left eye, she rushed to the emergency room. This came in the wake of a year of confusing health complications, constant nausea and tingling, she said. After a slew of testing and doctors' appointments in the months after, she was diagnosed with MS. But the treatments didn't help.

"I kept wondering, 'Is this really MS?' I had gone through an enormous amount of medication trying to figure out what would work and was just not getting better," Tucker recalled. She learned earlier this year, a decade after her initial diagnosis, that she actually has a condition called Neuromyelitis Optica Spectrum Disorder, or NMOSD, a rare, relapsing autoimmune disease that causes inflammation in the optic nerve and spinal cord—another condition that impacts women more frequently than men and has symptoms that overlap with MS.

"We just paid off the last bill from 2008 last month—I have accumulated an enormous amount of medical debt," Tucker, who has seen upwards of 25 doctors since first reporting her symptoms, said in June. This year alone, Tucker added, she has submitted at least 120 claims to insurance (which add up to roughly $600,000) and taken on $8,000 in fresh medical debt. On top of managing her intricate bill payments with her husband, she is raising five kids, painting out of her dining-room-turned studio, and adjusting to life in her home in Smyrna, Tennessee, now that she is visually impaired.

For women who are in the beginning of their search for a diagnosis, the obstacles to relief can seem crushing. "Awareness is the first step to change, and women advocating for themselves can and will transform healthcare," said Liu, the gynecological surgeon. "Medical practitioners also need to be educated on gender bias in healthcare to prevent further disparities and suboptimal care."

Indeed, the through-line for many women interviewed was years of being told their problem was anxiety or depression or stress—and that none of the symptoms they were experiencing were real. "My doctor put me on anxiety meds for a while and I felt like I was losing my mind," Dickson said. "After a while of being told it is all in your head, you start to believe it."

But it was the toll of being systematically disbelieved and drowning in debt all the while that seemed to do the most harm. Women said it degraded their mental health, strained their relationships, and limited future opportunities. With women often thrust into the role of caretaker, the deluge of obligations—to themselves and others—often proved overwhelming.

"When those bills start coming in, that is an anxiety that is hard to describe," Tucker said. "Not only are you trying to feel better, but you are also supporting your family, and that is something that weighs heavy."



 
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Articles in this issue:

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