Commentary Health Systems

Chronic Pain Is Overwhelmingly Experienced by Women—So Why Do They Have Trouble Getting Care for It?

s.e. smith

Until the sexism inherent in the social and medical response to chronic pain is addressed, women won’t be able to access the treatments they need.

In 2003, a medical researcher in Madison, Wisconsin, who writes under the screenname Sasha_Feather began experiencing debilitating facial pain that resisted treatment. First, a dentist incorrectly diagnosed her with temporomandibular joint dysfunction; next, a neurologist told her she was going through something “atypical.” Her referral to a pain clinic from her primary care physician only came with much battling, as is often the case with women in her situation. She eventually received a diagnosis of rheumatoid arthritis after the onset of new symptoms in 2012. It is unclear to her whether this condition has anything to do with her facial pain.

Sasha_Feather is one of the estimated 100 million adults in the United States who live with chronic pain. Most of these people are women—even so, the dialogue surrounding chronic pain is gendered, forcing women to surmount multiple obstacles to get the care and attention they need. Physicians frequently dismiss women who report chronic pain or write them off as experiencing emotional hysteria, unlike their male counterparts. In turn, public perceptions of these women reflect this this derision. Until the sexism inherent in the social and medical response to chronic pain is addressed, women won’t be able to access the treatments they need.

Many conditions can cause chronic pain. The adults experiencing it may be dealing with disorders like Sasha_Feather’s own rheumatoid arthritis, multiple sclerosis (MS), or fibromyalgia. Others have what used to be known as chronic fatigue syndrome (CFS)—now called systemic exertion intolerance disorder (SEID)—which tends to affect women more than men. Notably, CFS was a highly controversial diagnosis in past years, derided as “yuppie flu” and regarded as highly suspect by members of the public. This week’s decision by the Institute of Medicine to identify it as a consistent and very real medical condition is a sharp rejoinder to claims that women are faking or making up symptoms for attention.

Study after study has shown that doctors are more likely to request tests for men with chronic pain and treat their symptoms as a physical and neurological condition; physicians treat similar symptoms in women as a psychological or psychosocial issue, asking patients about factors like stress and their situations at home. Medical providers refer women to therapists rather than pain clinics, or tell them they’re exaggerating their experiences and refuse entirely to offer support and treatment. This happens whether women are reporting to emergency rooms, considering surgery for joint conditions, requesting referrals to pain clinics, or discussing troubling problems that might point to pain disorders. And for patients, this results in long delays in diagnosis and treatment, and weeks or even months of poorly managed pain.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

In an op-ed on the subject for the New York Times, writer Laurie Edwards described the effect medical providers’ preconceptions of her had on her treatment:

[D]octors lobbed questions at me: Why wasn’t I responding to the medication the way they expected I would? Was I just too anxious? Could I not handle stress, and was that making me sick? I was 23 before I was given a correct diagnosis of a rare genetic lung disease called primary ciliary dyskinesia. I’d been sick since birth, but long diagnostic journeys are occupational hazards of living with conditions doctors don’t often see. Still, my journey was unnecessarily protracted by my doctors’ dismissal of my symptoms as those of a neurotic young woman.

Sasha_Feather told Rewire that she, too, has faced disbelief on social and medical fronts, including the common attitude that women who complain about pain are exaggerating for attention. (She asked that we not use her real name.) “I feel like I am expected by society to ‘tough it out’ and work through my pain, and intellectually I know this is wrong but I feel it anyway,” she said. “Doctors do seem to expect the patient to manage their pain and take responsibility for it, instead of trying to ease their pain and showing sympathy toward the patient.”

There’s also the gendered and racialized belief that people complaining of such symptoms are drug-seekers—women, particularly Black women, are turned away from doctors or aggressively grilled when they complain of chronic pain because medical professionals suspect drug addiction. “I have an ongoing, nagging fear that I’ll be ‘cut off’ from pain meds that I’ve been taking for six-plus years,” said Anna, a government worker, who spoke with Rewire about her experiences with fibromyalgia. (Anna requested that we not use her last name.) “Pain meds are, to me, a tool: Many, many people in pain use them correctly and not as an escape or to get ‘high,’ which I think tends to get pushed aside in debates or discussions about drug addiction and diverted drugs.”

The beliefs that symptoms are hyperbolized, “all in her head,” or self-treatable are significant contributors to poor access to care. Women are less likely to receive narcotic medications and other strong pain management tools when they report issues like post-surgical pain, and this extends even to girls—one study showed that after surgery, boys were more likely to be given codeine, while girls received acetaminophen. Meanwhile, health-care professionals give women sedatives to manage pain, while men receive more appropriate medications. Such undertreatment of acute pain reflects the larger problems with the approach to chronic conditions. Disturbingly, physical appearance can even play a role in access to treatment, with more attractive women receiving better care.

The most effective way to address pain, according to physicians who specialize in the discipline, is to provide consistent treatment before the patient experiences the abrupt spikes of “breakthrough pain.” These sudden bursts can be emotionally stressful in addition to physically trying, interrupting the ability to work and perform tasks of daily living. By keeping pain levels manageable and ideally low, with measures that can include pharmacological options as well as physical therapy and other modalities, the effects of chronic pain can be greatly reduced. Unfortunately, women often don’t receive treatment that allows them to control their conditions with these principles in mind.

Pain spikes aren’t just unpleasant. Poorly managed pain can slow surgical recovery times, increase the risk of depression, and cause other medical complications. Long-lasting untreated symptoms can be grueling and unendurable. That has serious implications for women patients, and not just the obvious one—that they are left dealing with a persistent and debilitating medical condition that interferes with their quality of life, ability to work, and pleasure in socialization and activities. Chronic pain actually creates lasting changes to the brain and nervous system if it is not treated appropriately, shrinking the brain and changing the pathways of some neurological processes. Once these changes occur, they can’t be reversed, which is why adequate pain control is so important.

Mistreatment of chronic pain is only one of the medical discriminations women experience as a consequence of the sexist attitudes that dominate American culture. But given how how widespread the condition is, and how devastating its effects can be, it’s one of the more acute medical issues facing women in the United States. Any woman can develop chronic pain at any point in her life—it tends to be more common in older adults, but both Anna and Sasha_Feather started experiencing symptoms in their 20s—and it can manifest in a variety of ways.

Developing better approaches to chronic pain in women requires a two-pronged approach in the medical community. Researchers need to specifically focus on pain in women, including studying female subjects to learn more about how the issue interacts with women physically and neurologically. Such studies also need to include investigations on medications and other management tools for chronic pain to differentiate what works most effectively on various genders—and the issue of transgender men and women must be considered as well, to determine how genetics, hormones, and other factors interact.

With that in mind, women’s medical advocates and rights groups need to start calling for an end to the very real pain women are experiencing across the nation. That should also include demands for better education for physicians about medical discrimination, unconscious bias, and the provision of complete care for women with chronic pain. Disparate treatment on the basis of appearance, gender, race, and other factors creates gross inequalities in the medical system. Second-generation pain management tools are also critical, as many of the pharmacological interventions used today date back centuries, with opiates and related opioids still being the first line of treatment for patients with pain disorders.

Chronic pain will always be a complicated condition to manage, but it doesn’t have to be a sentence to lifelong misery.

Analysis Abortion

Legislators Have Introduced 445 Provisions to Restrict Abortion So Far This Year

Elizabeth Nash & Rachel Benson Gold

So far this year, legislators have introduced 1,256 provisions relating to sexual and reproductive health and rights. However, states have also enacted 22 measures this year designed to expand access to reproductive health services or protect reproductive rights.

So far this year, legislators have introduced 1,256 provisions relating to sexual and reproductive health and rights. Of these, 35 percent (445 provisions) sought to restrict access to abortion services. By midyear, 17 states had passed 46 new abortion restrictions.

Including these new restrictions, states have adopted 334 abortion restrictions since 2010, constituting 30 percent of all abortion restrictions enacted by states since the U.S. Supreme Court decision in Roe v. Wade in 1973. However, states have also enacted 22 measures this year designed to expand access to reproductive health services or protect reproductive rights.

Mid year state restrictions

 

Signs of Progress

The first half of the year ended on a high note, with the U.S. Supreme Court handing down the most significant abortion decision in a generation. The Court’s ruling in Whole Woman’s Health v. Hellerstedt struck down abortion restrictions in Texas requiring abortion facilities in the state to convert to the equivalent of ambulatory surgical centers and mandating that abortion providers have admitting privileges at a local hospital; these two restrictions had greatly diminished access to services throughout the state (see Lessons from Texas: Widespread Consequences of Assaults on Abortion Access). Five other states (Michigan, Missouri, Pennsylvania, Tennessee, and Virginia) have similar facility requirements, and the Texas decision makes it less likely that these laws would be able to withstand judicial scrutiny (see Targeted Regulation of Abortion Providers). Nineteen other states have abortion facility requirements that are less onerous than the ones in Texas; the fate of these laws in the wake of the Court’s decision remains unclear. 

Ten states in addition to Texas had adopted hospital admitting privileges requirements. The day after handing down the Texas decision, the Court declined to review lower court decisions that have kept such requirements in Mississippi and Wisconsin from going into effect, and Alabama Gov. Robert Bentley (R) announced that he would not enforce the state’s law. As a result of separate litigation, enforcement of admitting privileges requirements in Kansas, Louisiana, and Oklahoma is currently blocked. That leaves admitting privileges in effect in Missouri, North Dakota, Tennessee and Utah; as with facility requirements, the Texas decision will clearly make it harder for these laws to survive if challenged.

More broadly, the Court’s decision clarified the legal standard for evaluating abortion restrictions. In its 1992 decision in Planned Parenthood of Southeastern Pennsylvania v. Casey, the Court had said that abortion restrictions could not impose an undue burden on a woman seeking to terminate her pregnancy. In Whole Woman’s Health, the Court stressed the importance of using evidence to evaluate the extent to which an abortion restriction imposes a burden on women, and made clear that a restriction’s burdens cannot outweigh its benefits, an analysis that will give the Texas decision a reach well beyond the specific restrictions at issue in the case.

As important as the Whole Woman’s Health decision is and will be going forward, it is far from the only good news so far this year. Legislators in 19 states introduced a bevy of measures aimed at expanding insurance coverage for contraceptive services. In 13 of these states, the proposed measures seek to bolster the existing federal contraceptive coverage requirement by, for example, requiring coverage of all U.S. Food and Drug Administration approved methods and banning the use of techniques such as medical management and prior authorization, through which insurers may limit coverage. But some proposals go further and plow new ground by mandating coverage of sterilization (generally for both men and women), allowing a woman to obtain an extended supply of her contraceptive method (generally up to 12 months), and/or requiring that insurance cover over-the-counter contraceptive methods. By July 1, both Maryland and Vermont had enacted comprehensive measures, and similar legislation was pending before Illinois Gov. Bruce Rauner (R). And, in early July, Hawaii Gov. David Ige (D) signed a measure into law allowing women to obtain a year’s supply of their contraceptive method.

071midyearstatecoveragetable

But the Assault Continues

Even as these positive developments unfolded, the long-standing assault on sexual and reproductive health and rights continued apace. Much of this attention focused on the release a year ago of a string of deceptively edited videos designed to discredit Planned Parenthood. The campaign these videos spawned initially focused on defunding Planned Parenthood and has grown into an effort to defund family planning providers more broadly, especially those who have any connection to abortion services. Since last July, 24 states have moved to restrict eligibility for funding in several ways:

  • Seventeen states have moved to limit family planning providers’ eligibility for reimbursement under Medicaid, the program that accounts for about three-fourths of all public dollars spent on family planning. In some cases, states have tried to exclude Planned Parenthood entirely from such funding. These attacks have come via both administrative and legislative means. For instance, the Florida legislature included a defunding provision in an omnibus abortion bill passed in March. As the controversy grew, the Centers for Medicare and Medicaid Services, the federal agency that administers Medicaid, sent a letter to state officials reiterating that federal law prohibits them from discriminating against family planning providers because they either offer abortion services or are affiliated with an abortion provider (see CMS Provides New Clarity For Family Planning Under Medicaid). Most of these state attempts have been blocked through legal challenges. However, a funding ban went into effect in Mississippi on July 1, and similar measures are awaiting implementation in three other states.
  • Fourteen states have moved to restrict family planning funds controlled by the state, with laws enacted in four states. The law in Kansas limits funding to publicly run programs, while the law in Louisiana bars funding to providers who are associated with abortion services. A law enacted in Wisconsin directs the state to apply for federal Title X funding and specifies that if this funding is obtained, it may not be distributed to family planning providers affiliated with abortion services. (In 2015, New Hampshire moved to deny Title X funds to Planned Parenthood affiliates; the state reversed the decision in 2016.) Finally, the budget adopted in Michigan reenacts a provision that bars the allocation of family planning funds to organizations associated with abortion. Notably, however, Virginia Gov. Terry McAuliffe (D) vetoed a similar measure.
  • Ten states have attempted to bar family planning providers’ eligibility for related funding, including monies for sexually transmitted infection testing and treatment, prevention of interpersonal violence, and prevention of breast and cervical cancer. In three of these states, the bans are the result of legislative action; in Utah, the ban resulted from action by the governor. Such a ban is in effect in North Carolina; the Louisiana measure is set to go into effect in August. Implementation of bans in Ohio and Utah has been blocked as a result of legal action.

071midyearstateeligibilitytable

The first half of 2016 was also noteworthy for a raft of attempts to ban some or all abortions. These measures fell into four distinct categories:

  • By the end of June, four states enacted legislation to ban the most common method used to perform abortions during the second trimester. The Mississippi and West Virginia laws are in effect; the other two have been challenged in court. (Similar provisions enacted last year in Kansas and Oklahoma are also blocked pending legal action.)
  • South Carolina and North Dakota both enacted measures banning abortion at or beyond 20 weeks post-fertilization, which is equivalent to 22 weeks after the woman’s last menstrual period. This brings to 16 the number of states with these laws in effect (see State Policies on Later Abortions).
  • Indiana and Louisiana adopted provisions banning abortions under specific circumstances. The Louisiana law banned abortions at or after 20 weeks post-fertilization in cases of diagnosed genetic anomaly; the law is slated to go into effect on August 1. Indiana adopted a groundbreaking measure to ban abortion for purposes of race or sex selection, in cases of a genetic anomaly, or because of the fetus’ “color, national origin, or ancestry”; enforcement of the measure is blocked pending the outcome of a legal challenge.
  • Oklahoma Gov. Mary Fallin (R) vetoed a sweeping measure that would have banned all abortions except those necessary to protect the woman’s life.

071midyearstateabortionstable

In addition, 14 states (Alaska, Arizona, Florida, Georgia, Idaho, Indiana, Iowa, Kentucky, Louisiana, Maryland, South Carolina, South Dakota, Tennessee and Utah) enacted other types of abortion restrictions during the first half of the year, including measures to impose or extend waiting periods, restrict access to medication abortion, and establish regulations on abortion clinics.

Zohra Ansari-Thomas, Olivia Cappello, and Lizamarie Mohammed all contributed to this analysis.

Commentary Human Rights

The Catch-22 of Hiding Your Mental Illness

Katie Klabusich

By staying silent, even for good reasons, we unintentionally perpetuate the assumptions that mental illness equals disruptive behavior, potential violence, and a hostile work environment, because most people aren’t given the opportunity to personally experience a mentally ill person being competent.

“But you don’t seem sick.”

It’s delivered with the tone of a compliment almost every time. I don’t seem like the kind of person who has a mental illness: someone broken and unstable, borderline competent at best. Or two. Or three. With a fourth diagnosis pending. I seem capable and intelligent and professional—all words that, according to depictions put forth by society and the media, don’t sync with the phrase “mentally ill.”

Many of us whose conditions don’t require treatment that causes extended work absences, like periodic hospital stays, remain hidden for personal and career reasons. We rightly fear retribution or discrimination at work, and being seen as broken or incompetent in our personal lives. But by staying silent, even for good reasons, we unintentionally perpetuate the assumptions that mental illness equals disruptive behavior, potential violence, and a hostile work environment, because most people aren’t given the opportunity to personally experience a mentally ill person being competent. Instead, they’re left with media and fictional depictions that paint us as dangerous and volatile, thus further incentivizing us to stay hidden.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

“So, what do you have?”

If this question were asked by loved ones who wanted to learn what I need, rather than being unhelpful bystanders by asking unnecessary, potentially harmful emotional labor of me, I would respond with kindness. But this is the sort of question asked by everyone from potential partners to employers and contractors who want to know what they’re getting into by inviting me into their lives. When I answer that I have been diagnosed with extreme, disability-level attention deficit disorder (ADHD), dysthymia (intermittent, chronic depression), anxiety, and likely post-traumatic stress disorder, people cringe because that’s more than a mouthful. Even people who incorrectly assume those are all fixable conditions that I can get over or learn to live with think—and say—things like: “Wow, that’s…a lot.”

Having to repeatedly disclose, educate, make promises about our competency, and ask for understanding from those around us are some of the things that are actually a lot for people with mental illnesses. We cannot constantly shoulder this along with our already packed schedules balancing doctors’ appointments, trips to the pharmacy, and tracking medications and side effects. And those are the mere inconveniences (and expenses) for those of us who have access to decent mental health care. The Affordable Care Act reduced insurance discrimination, but has left predictable, sizable gaps in care for many of us, according to the National Institutes of Health and backed up by reporting at The Washington Post, U.S. News and World Report, USA Today, the New York Times, Newsweek—name the outlet, it has likely published on it over the last four years.

The hurdles that are more challenging to report on because they are cultural and systemic are the myriad ways disclosing our mental health conditions can affect how we are treated in personal relationships as well as the workplace.

As I dealt with poverty over the years, my friends and family—and even my employers in the service industry—mostly attributed my struggles with timing and economic issues in the country at large. I was committed to the “making it work” life philosophy. I woke up every day and begrudgingly grabbed my bootstraps and pulled till I fell down. People said things like “Oh, she always lands on her feet!”—as though that’s effortless, not a perpetual conscious effort to never burn bridges and be a reliable employee. I maintained my competent reputation, one I depended on to make sure I always had enough work to pay rent. I couldn’t have risked taking time off to see doctors and therapists, even if my insurance before the ACA would’ve covered it.

For a long time, I also didn’t want to be officially labeled “mentally ill.” The reality of a “permanent record” may be overblown by our grade school experiences, but the concept is still very much true thanks to employee reviews, medical records, and the like. Once you’re labeled, you’re labeled. There’s no guarantee, even if you like your current boss, that you’ll like their replacement and you risk co-workers finding out and treating you like you’re broken or possibly dangerous.

The Americans With Disabilities Act (ADA) may require “employers to provide reasonable accommodations” for those of us who are qualified to do a job, but that requires disclosing diagnoses with massive stigma to potential and current employers. It also often requires having a diagnosis that’s recognized as a disability under the law.

The Equal Opportunity Employment Commission (EEOC) guidelines say: “A reasonable accommodation may be obtained for any condition that would, if left untreated, ‘substantially limit’ one or more major life activities, which include brain/neurological functions and activities such as communicating, concentrating, eating, sleeping, regulating thoughts or emotions, caring for oneself, and interacting with others.” However, the diagnoses that come with federal disability status—major depressive disorder, bipolar disorder, post-traumatic stress disorder, obsessive compulsive disorder, and schizophrenia—are typically more recognizable as conditions requiring accommodations. My “less serious” conditions have been easily brushed off by employers and contractors. Everyone has been distracted, felt sad, and been nervous before a presentation, leading many to think my ADHD, dysthymia, and anxiety are passing rather than constant. Sure, I have easier days and rougher days, but I don’t “get over it” and there’s no magic cure—trust me, I’ve looked for one. It’s a long road to a modest level of wellness and some days it straight-up sucks.

Because my conditions are ongoing, and federal law says I don’t have to experience symptoms while I’m actively being treated for my illnesses in order to receive “reasonable accommodations,” it shouldn’t matter if I never feel anxious or nauseated or dizzy. But, I have yet to have an employer or contractor who cared that the EEOC recognizes the way a cubicle setting around other people or required, unnecessary, near-constant engagement with co-workers causes me to basically feel like I’m coming apart at the seams.

“A condition does not have to result in a high degree of functional limitation to be ‘substantially limiting,’” according to the EEOC. “It may qualify by, for example, making activities more difficult, uncomfortable, or time-consuming to perform compared to the way that most people perform them.”

Under this interpretation, I would also seem to qualify for accommodations to mitigate medication side effects that cause about 45 minutes of dizziness in the morning and difficulty focusing even with treatment. When I was working jobs without paid time off, the need for mid-morning breaks to lie down and ride out side effects would have been laughed off. So, instead, I, like many others, stayed hidden.

Eventually, my day-to-day frustrations felt impossible to hide. Talking about my anxiety on Twitter became a coping mechanism. And once I started the process of seeking treatment I realized how complicated and hard it was; I found a lot of relief writing about it openly through the feedback from others who feel less alone, weird, and overloaded with self-blame.

This has gone hand-in-hand with my transition to freelance work. When I’m at home, I can work from my bed and not have much disruption in my schedule. This would be impossible in any typical work environment. I can eat on a schedule dictated by my medications (some have to be taken on an empty stomach, others with food); take a nap if nightmares kept me up; shut off communication to keep from being overloaded; and somewhat control my schedule to make time for doctors’ appointments. I fear new medication side effects less because I don’t have to worry whether or not I’ll be able to drive to or from work, sit up for a full eight- to ten-hour day, or be extremely thirsty. Drinking water constantly also means a stretch of frequent bathroom trips—less of an annoyance at home.

Working from home can’t solve all my problems, though, because I still have to work with and for other people. I can’t tend to every need, for example; I had to reschedule my psychiatrist and therapist last week to write on deadline. Even as a freelancer, I’ve heard plenty of microaggressions and ableist comments: “Why is that taking you so long?”—with no words of appreciation for how much more quickly my neurobiology processes other tasks. I’ve had my need to turn off communication when no tasks were scheduled for one contractor so I could meet other deadlines held against me. For some, having a message app on constantly might not cause problems; for me, it created a perpetual spike in my anxiety.

Still, I was held accountable for someone else’s inability to plan ahead, rather than given an apology for an attempt to interrupt me while I was tending to other work. Because I don’t “seem sick,” and I do good work, I’m expected to go above and beyond to take on tasks that aren’t in my job description or overload myself.

As a consequence of staying hidden, our performance and participation at work and in life suffer even while we manage to “pass” and be seen as “fine” or “normal.” And because we suffer in silence, should any additional complication or symptom—or simply our finally having had enough of dealing with being miserable—lead us to finally seek care, we can have trouble being believed. We experience the ultimate Catch-22: We are seen as just capable enough that we aren’t believed, while being criticized or ostracized when we can’t conform to neurotypical (not affected with a developmental disorder) culture.

This can even bleed over into our doctors’ offices; most screening questions from primary care physicians (still the gatekeepers in our insurance-based medical system) center around symptoms that cause life disruptions. If we have managed too well for too long, no matter how we felt internally, we can be brushed off or receive inaccurate diagnoses. Nearly every conceivable iteration of this has happened to me. I’ve had misdiagnoses, missed diagnoses, revised diagnoses and had to plead my case to get someone—anyone—to maintain my prescriptions after a move while I shopped for a psychiatrist in my new area.

There is no easy fix for these challenges and discrimination; culture change through awareness, education, and workplace trainings will take time and we have to demand them. We need better enforcement of existing EEOC guidelines and ADA law as well as a concerted effort from employers to provide better working conditions. Company-wide flex time, work from home options, and paid personal leave are all policies typically thought of as “family-friendly” that would help everyone and make accommodations largely unnecessary. When everyone can take the time they need, those whose flexibility requirements are tied to a mental illness wouldn’t stand out or be subject to disciplinary action if they chose not to disclose their condition. And as more of those of us who do choose to disclose come forward about our lived experiences, we become a powerful advocacy bloc able to insist on more inclusive, supportive workplace policies.