‘My Pain Was No Big Deal’: Obese Patients Often Stigmatized by Doctors

By Lauren Sausser, Kaiser Health News

When Melissa Boughton complained to her OB-GYN about dull pelvic pain, the doctor responded by asking about her diet and exercise habits.

The question seemed irrelevant, considering the type of pain she was having, Boughton thought at the time. But it wasn’t unusual coming from this doctor. “Every time I was in there, she’d talk about diet and exercise,” said Boughton, who is 34 and lives in Durham, North Carolina.

On this occasion, three years ago, the OB-GYN told Boughton that losing weight would likely resolve the pelvic pain. The physician brought up diet and exercise at least twice more during the appointment. The doctor said she’d order an ultrasound to put Boughton’s mind at ease.

The ultrasound revealed the source of her pain: a 7-centimeter tumor filled with fluid on Boughton’s left ovary.

“I hate that doctor for the way she treated me — like my pain was no big deal,” Boughton said. “She seemed to make a decision about me based off of a very cursory look.”

Research has long shown that doctors are less likely to respect patients who are overweight or obese, even as nearly three-quarters of adults in the U.S. now fall into one of those categories. Obesity, which characterizes patients whose body mass index is 30 or higher, is pervasive in the South and Midwest, according to the Centers for Disease Control and Prevention. The state with the highest rate is Mississippi, where 4 in 10 adults qualify as obese.

Obesity is a common, treatable condition linked to a long list of health risks, including Type 2 diabetes, heart disease, and some cancers. Despite obesity’s prevalence, it carries a unique stigma.

‘Almost Like Malpractice’

Doctors often approach the practice of medicine with an anti-fat bias and struggle to communicate with patients whose weight exceeds what’s considered the normal range. Some obesity experts blame a lack of focus on the subject in medical schools. Others blame a lack of empathy.

To counter that, the Association of American Medical Colleges plans to roll out in June new diversity, equity, and inclusion standards aimed at teaching doctors, among other things, about respectful treatment of people diagnosed as overweight or obese.

That’s not happening for many patients, said Dr. Scott Butsch, director of obesity medicine at the Cleveland Clinic’s Bariatric and Metabolic Institute. “This is almost like malpractice. You have these physicians or clinicians — whoever they are — relating everything to the patient’s obesity without investigation,” Butsch said. “The stereotypes and misperceptions around this disease just bleed into clinical practice.”

The problem, Butsch argued, is that too little attention is paid to obesity in medical school. When he trained and taught at Harvard Medical School for several years, Butsch said, students received no more than nine hours of obesity education spread over three days in four years.

In 2013, the American Medical Association voted to recognize obesity as a disease. But, Butsch said, doctors often approach it with a one-size-fits-all approach. “Eat less, move more” doesn’t work for everyone, he said.

Parents and medical providers need to take special care when talking to children who have been diagnosed with obesity about their weight, psychologists have warned. The way parents and providers talk to kids about their weight can have lifelong consequences and in some cases trigger unhealthy eating habits. For children who are obese, obesity experts agree, weight loss isn’t always the goal.

“There are many different forms of obesity, but we’re treating them like we’re giving the same chemotherapy to all kinds of cancer,” Butsch said.

Doctors Poorly Trained About Weight

All but four of the country’s 128 M.D.-granting medical schools reported covering content related to obesity and bariatric medicine in the 2020-21 academic year, according to curriculum data provided to KHN by the Association of American Medical Colleges, which does not represent osteopathic schools.

Even so, research suggests that many physicians haven’t been sufficiently trained to address weight issues with patients and that obesity education in medical schools across the world is “grossly neglected.” A survey completed by leaders at 40 U.S. medical schools found that only 10% felt their students were “very prepared” to manage patients with obesity.

Meanwhile, “half of the medical schools surveyed reported that expanding obesity education was a low priority or not a priority,” wrote the authors of a 2020 journal article that describes the survey’s results.

Butsch wants Congress to pass a resolution insisting that medical schools incorporate substantive training on nutrition, diet, and obesity. He acknowledged, though, that the medical school curriculum is already packed with subject matter deemed necessary to cover.

Dr. David Cole, president of the Medical University of South Carolina, said plenty of topics should be covered more comprehensively in medical school but aren’t. “There’s this massive tome — it’s about this big,” Cole said, raising his hand about a foot off the top of a conference table in Charleston. “The topic is: Things I never learned in medical school.”

The bigger issue, he said, is that medicine has historically been taught to emphasize memorization and has failed to emphasize culturally competent care. “That was valid 100 years ago, if you were supposed to be the fount of all knowledge,” Cole said. “That’s just not valid anymore.”

The Association of American Medical Colleges is trying to tackle the problem in two ways.

First, it developed a professional readiness exam for aspiring medical school students, called PREview, designed to assess an applicant’s cultural competence, social skills, and listening skills, as well as their ability to think through situations they may encounter in medical school and clinical settings.

“We call them softer skills, but they’re really the harder ones to learn,” said Lisa Howley, an educational psychologist and senior director of strategic initiatives at the association. More than a dozen medical schools now recommend or require that applicants submit their PREview test scores with their Medical College Admission Test scores.

Second, the medical college association will roll out new competency standards for existing medical students, residents, and doctors related to diversity, equity, and inclusion in June. Those standards will address racism, implicit bias, and gender equality and will aim to teach doctors how to talk with people who are overweight.

“The bias toward those individuals is way too high,” Howley said. “We have a lot more work to do in this space.”

After the source of Melissa Boughton’s pelvic pain was discovered, the OB-GYN who had recommended diet and exercise to ease her symptoms told Boughton the tumor was no big deal. “She acted like it was the most normal thing in the world,” Boughton said.

Boughton sought a second opinion from a doctor who marketed her practice as a “Healthy at Every Size” office. That doctor referred Boughton to a surgical oncologist, who removed the tumor, her left ovary, and part of a fallopian tube. The tumor was large, but it wasn’t cancerous. And although the surgery to remove it was considered successful, Boughton has since had trouble conceiving and is undergoing fertility treatment as she tries to have a baby.

“It’s an emotional roller coaster,” she said. “I feel very young at 34 to be going through this.”

Boughton — who describes herself as someone who doesn’t “fit into the BMI box” — said the experience taught her to choose her doctors differently.

“You can ask me if I diet and exercise like once,” she said. Any more than that, and she starts shopping for a different doctor.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.  

Why Doctors Need to Address Stigma and Guilt Caused by Chronic Pain

By Dr. Joseph Cabaret, Guest Columnist

Chronic pain is known to affect more than one in five American adults. That’s about 50 million people who feel pain most days or every day – leaving them trapped in a cycle of physical pain. Worse yet, a recent study found that those suffering from chronic pain often deal with guilt-induced feelings and social stigma as a result of it.

To those unfamiliar with the reality of living with chronic pain, feeling guilt over such a condition may seem strange. But the reasons for it become pretty obvious once you reflect on them and recognize the harm they cause. Guilt-induced feelings can lead to severe mental health issues and social stigma that debilitate a chronic pain sufferer's life even more.

What can medical professionals and the general public do to alleviate these issues?

Chronic pain is typically described as long-term pain that lasts at least three months and has no end in sight. It is both a physical and an emotional experience, although sadly the emotional component is rarely addressed adequately by patients or healthcare professionals.

Pain is often attributed to physical illnesses such as fibromyalgia, back problems, irritable bowel syndrome, post-surgical pain, cancer, arthritis, or even just headaches or migraines. Usually, the underlying emotional causes or contributors go undetected, and since there is often no easily discernible tissue damage present, its existence is not always obvious to a casual observer. But it is ever-present and can severely impact an individual's ability to live a full life.

Therapy, rather than a cure, is often the only recourse chronic pain sufferers have. This can take the form of art, music, or other hobbies and passions the patient has. The aim is simply to take their minds off the pain and give them an emotional outlet.

For many chronic pain sufferers, the worst part is not being able to plan for future events because they can’t predict how they will feel on a particular day. This leads to missed workdays, cancelled social events, and an ever-increasing downward spiral in their mental health.

Chronic Pain and Mental Health

Having to live with such a condition is bound to have negative consequences. Patients often suffer from depression, feelings of inadequacy, negative changes in identity, and difficulties with getting enough sleep.

Then there’s the added frustration of often not being able to make others understand the reality of their experience. To make matters worse, it is difficult for most patients to understand and acknowledge the impact that these psycho-social-spiritual factors have on their lives and why biomedical therapies alone don’t help. This can lead to feeling that they are somehow to be blamed.

Pain-related guilt often stems from a patient’s inability to convince others that their condition is legitimate. Since the causes of the pain are often not readily apparent (even after a medical examination), patients are sometimes treated like their condition is not real.

Doctor’s appointments often lead to a long line of questions that can make patients feel like a fraud or that their condition is entirely psychosomatic. This isn't helped either by the social stigma that sometimes puts the blame on the patient for not managing their condition well enough. Then there’s the personal guilt a patient can feel from not being able to fulfill their duties and responsibilities at home or at work.

Left unchecked, all of this can lead to severe mental health issues that can result in drug or alcohol abuse, total mental breakdown, and even suicide. It’s a facet of the nation’s ongoing mental health crisis that is too often ignored. 

How to Help Patients Address Guilt

In terms of addressing the chronic pain itself, there may be very little that doctors, family members or co-workers can do for someone. It is often simply something they must learn to live with. But there is a lot that can be done to lessen the patient’s feelings of guilt from their condition.

To start with, care should be taken to provide validation and reassurance that the patient's chronic pain is real. Chronic pain sufferers need to feel listened to and understood if they're to have any chance of living well with their condition.

By integrating behavioral health treatment with pain treatment, physicians can have a clearer understanding of what a patient is going through and what treatments are working. Through gentle and skillful counseling, patients can also learn to connect their pain to their emotional difficulties and better address them without the guilt that comes from misguided statements implying “it’s all in your head.”

Using technology for remote monitoring can be of help with this, providing a better understanding of a patient’s physical and mental condition, and leading to more valuable insights and better long-term care.

A better public awareness of the social stigma that chronic pain sufferers must deal with would also go a long way in helping them deal with their condition. Family members, friends and co-workers can help in this by refraining from criticizing or stigmatizing those with chronic pain. Instead, make them feel understood, validated and respected. They have so much to deal with, and a few kind words and social support can go a long way in making things easier for them.

With better awareness and understanding may come new treatments for chronic pain. Pain medicine is still a relatively new field, and much work remains to be done on understanding the causes of it and how it can be treated. Until then, often the best that medical professionals and the general public can do is make chronic pain sufferers feel less stigmatized and more understood.

Joseph Cabaret, MD, is a pain and addiction medicine specialist at Wellbrain, a digital health platform for doctors. WellBrain's founding Stanford, Harvard and Mayo Clinic trained physicians designed WellBrain to help providers assess, engage and monitor their patients’ physical and mental health over time.

Dr. Cabaret’s private practice is located in Camarillo, CA, where he specializes in Interventional Pain Management, Regenerative Medicine, and Addiction Medicine.

Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org. 

Most Sickle Cell Patients Face Stigma During ER Visits

By Pat Anson, PNN Editor

Nearly two-thirds of people with sickle cell disease in the U.S. feel judged and stigmatized when they visit an emergency department due to a pain flare, according to a new survey by Health Union.

About 100,000 Americans live with sickle cell disease (SCD), a genetic disorder that mainly affects people of African or Hispanic descent. SCD causes red blood cells to form in a crescent or sickle shape, which can create blockages in blood vessels that cause intense pain.  It’s not uncommon for someone with SCD to visit an ER a few times each year due to pain or complications such as anemia, stroke, infection and organ failure.

Health Union surveyed 111 people living with SCD to share their experiences dealing with the disease and how they are perceived by healthcare professionals, coworkers, teachers, friends and family members. Most said they did not feel judged or stigmatized by others – except when dealing with ER staff.

Many felt ER staff were rude, ignorant or misinformed about sickle cell disease, didn’t take their pain seriously, and believed they were drug seekers. Nearly half of those surveyed (43%) said they avoided going to the ER because they worried that people would judge them.

“A doctor judged me during a hospitalization. He stated I wasn’t in that much pain to be using Dilaudid. He also stated I was drug seeking because a sickle cell crisis can be managed with Motrin. His statement is not true!” one participant told Health Union.

Sickle cell patients had an entirely different take on their pharmacists, hematologists and primary care providers. Over half (53%) trusted their providers and felt their primary care doctors were friendly, understanding, easy to talk to, and provided excellent care.

"Navigating the healthcare system can already be complex, but undergoing such wildly different experiences can make access to reliable, timely, effective care even more difficult for people with sickle cell disease," said Olivier Chateau, Health Union's co-founder and CEO.

The finding that many people are not happy with their pain treatment in hospitals is not unique to sickle cell patients.  A 2016 PNN survey of over 1,250 hospitalized pain patients found that most felt they were labeled as addicts or drug seekers. Over 80% believed hospital staff were not adequately trained in pain management and over half rated the quality of pain care in hospitals as poor or very poor.  

A report last year by the National Academies of Sciences, Engineering, and Medicine found that sickle cell patients often face discrimination and stigma when navigating the healthcare system. The report found that SCD received little attention from the healthcare community compared to other chronic illnesses. To get proper treatment, many sickle cell patients have to educate themselves about their disease and become their own advocates.

The Health Union survey found that nearly three out of four sickle cell patients (73%) were currently using a prescription analgesic. Many others took prescription strength NSAIDs (35%), muscle relaxants (23%) or anti-anxiety/antidepressant drugs (16%). Only 5% said they experienced an issue with substance abuse.

Patients in Addiction Treatment Often Stigmatized by Doctors

By Pat Anson, PNN Editor

Most chronic pain patients are well aware of the stigma associated with using opioids. A recent PNN survey of over 3,600 pain sufferers found that about a third had been abandoned by a doctor (29%) and many were unable to find a new physician to treat their pain (36%).

“I was abandoned by the doctor who did my last operation,” a veteran with CRPS told us. “I should have been put on whatever pain medication possible to ease my pain. I wasn't. I'm not a drug addict and I damn sure don't appreciate being treated like one!”

“The stigma and refusing to treat needs to be addressed. Stigma by pharmacists, doctors and society is cutting life short. Patients have become social pariahs. Severe surgeries are conducted and patient is sent home with Aleve. It’s barbaric, cruel and inhumane,” another patient said.

The stigma also extends to people being treated for opioid use disorder (OUD), according to a new study of patients in the Canadian province of Ontario. Researchers at St. Michael's Hospital in Toronto analyzed the health records of nearly 155,000 patients who were discharged by a primary care physician between 2016 and 2017.

The research findings, recently published in PLOS Medicine, found that patients prescribed an addiction treatment drug such as Suboxone or methadone were 45% less likely to find another primary care provider (PCP) in the next year compared to other patients.

"There are considerable barriers to accessing primary care among people who use opioids, and this is most apparent among people who are being treated for an opioid use disorder. This highlights how financial disincentives within the healthcare system, and stigma and discrimination against people who use drugs introduce barriers to high quality care," said lead author Tara Gomes, PhD, a researcher at St. Michael’s Li Ka Shing Knowledge Institute.

"Ongoing efforts are needed to address stigma and discrimination faced by people who use opioids within the health care system, and to facilitate access to high quality, consistent primary care services for chronic pain patients and those with OUD.”

Surprisingly, Gomes and her colleagues found that pain patients on long-term opioid therapy in Ontario did not have a harder time finding a new PCP. That finding is at odds with a recent study in the United States, which found that nearly half of primary care practices would not accept new patients who were already taking opioids.

Researchers think the discrepancy may be due to the U.S. having a private healthcare system, where there is a financial incentive to drop patients with complex health needs, as opposed Canada’s publicly funded healthcare system.

During the gap in their primary care coverage, about 5% of Ontario patients on long-term opioids visited an emergency room, suggesting that the loss of a PCP led to further health problems that made them seek care in a hospital. In effect, patient abandonment not only made those people sicker, it shifted the financial burden of their healthcare to someone else.

“Although the structure of primary care differs across North America, our findings suggest that even in a province with a publicly funded healthcare system that has undergone considerable primary care transformation, barriers to care continue to exist for people who use opioids, particularly those with an OUD,” Gomes wrote.

The researchers said insurance reimbursement policies should be reviewed to ensure that they do not lead to the discrimination and stigmatization of patients. Doctors should also be educated on how abandoning or discharging patients can be harmful.

Patient abandonment may have grown worse since Canada adopted a new opioid prescribing guideline in 2017. A 2019 survey of patients by the Chronic Pain Association of Canada found that about a third of patients had either been abandoned by a doctor or their doctor refused to continue prescribing opioids to them.