Linda Bluestein remembers all the doctors who missed, ignored, or incompletely diagnosed her chronic illness.
There was the orthopedic surgeon who noted her hyperextended elbows but failed to check any of her other joints. The gastroenterologist who insisted on performing multiple scoping procedures but wouldn’t discuss how to manage her symptoms. The other surgeon who, after performing arthroscopy on her injured knee, yelled at her, “There is nothing wrong with your knee! You’re fine!” in a room full of people.
Dr Linda Bluestein
And then there was the rheumatologist who said, “Oh, you want something to be wrong with you?”
“No,” Bluestein replied, “I want an explanation. I want to keep working. I just want to know why these things keep happening to me.”
The medical frustration Bluestein experienced was especially difficult because, like her healthcare providers, Bluestein has an MD after her name. She is a board-certified anesthesiologist and integrative medicine physician.
Living with a chronic illness is a challenge for any patient. But physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.
Along with the physically demanding schedule of medical practice, they must cope with what many call a “culture of invincibility” within medicine. Doctors are not supposed to get sick. In fact, the unwritten rule is presenteeism ― to function without adequate food or sleep and to never prioritize their own self-care over their dedication to their patients.
Whether their conditions are visible, such as muscular dystrophy and multiple sclerosis, or invisible, such as fibromyalgia and mental illnesses ― and now, long COVID ― these doctors often meet significant stigma. They fight the assumption that they are less capable than their colleagues.
But they also experience an invaluable benefit: They gain firsthand knowledge of the patient experience, a profound understanding which, they say, enhances how they care for their own patients.
What It Takes to Become a Doctor When You Have a Chronic Condition
In short, it’s not easy.
Data from the 2018 National Health Interview Survey show that more than half of US. adults had at least one of several chronic conditions, including rheumatoid arthritis, asthma, diabetes, hypertension, and kidney problems. Nearly a third of respondents had more than one condition. But fewer than 5% of medical students and 3% of practicing physicians report having a chronic illness or disability, according to studies from 2019 and 2021.
While that could mean that fewer people with chronic illness enter medicine, cases also exist in which aspiring physicians with conditions were dissuaded from pursuing a career in medicine at all.
Dr Amy Stenehjem
Amy Stenehjem, MD, a physical medicine and rehabilitation physician, is one of the exceptions. Diagnosed with several autoimmune-related conditions as a teenager and young adult, Stenehjem was determined to become a doctor. In her 20s, her health was relatively stable, and she was able to manage medical school and residency. Her training institutions agreed to provide some accommodations that helped her succeed.
“They let me build some flexibility into the training,” Stenehjem says. “In medical school, when I knew I wasn’t going to be able to do a particular specialty as a career, they let me work with an attending doctor that did not require a lot of on-call time during that particular rotation.”
Stenehjem specialized in chronic neck and back disorders, fibromyalgia, chronic fatigue
syndrome (myalgic encephalomyelitis), and autoimmune-related diseases. She practiced for more than a decade. But in 2011, her condition spiraled. She couldn’t walk a few steps or even sit upright without experiencing dizziness and shortness of breath. She had debilitating fatigue and episodes of fever, rash, headaches, and joint pain.
It would take 7 years and more than 20 doctors to determine Stenehjem’s multiple diagnoses. In addition to her autoimmune diseases, she was diagnosed with postural
orthostatic tachycardia syndrome, autoinflammatory periodic fever syndrome, Lyme disease, and reactivated Epstein-Barr infection.
While she suspects that her providers gave her more “leeway” because she was a physician, many did not show a deep understanding of the severity of her symptoms and the impact those symptoms had.
“When I was practicing, I really didn’t fully understand the impact chronic illness had on my patients,” Stenehjem says. “Things like chronic dizziness, headaches, fatigue, pain, or brain fog can be really hard to understand unless you’ve experienced these symptoms. When I got sick, I finally realized, ‘Oh my goodness, when a patient says they’re dealing with fatigue, this is not your normal, I’m-super-tired-from-being-on-call fatigue. This is I-can’t-get-out-of-bed fatigue.’ That’s what people with chronic illness often deal with on a daily basis.”
Treating the Individual
Stenehjem was aware that her chronic illness would affect her medical career. For Jason Baker, MD, an endocrinologist at Weill Cornell Medicine in New York, it came as a shock. Baker was a third-year medical student when he experienced increased urination and rapid weight loss. It was only when friends pressed him to visit student health that a blood test revealed type 1 diabetes. Baker suddenly found himself lying in a hospital bed.
Dr Jason Baker
He remembers an attending physician who simply handed him a textbook on diabetic ketoacidosis (DKA) and a resident who informed him that he had kidney damage, which turned out to be untrue. Neither discussed the psychological issues from a frightening diagnosis that would require lifelong, daily management.
“There certainly could have been a bit more empathy from some of the people I dealt with early on,” he says.
Although his training gave him a stark picture of worst-case scenarios, Baker found that knowledge motivating. “I’d already seen patients come in who had diabetes complications,” Baker says. “I vowed to never ever get those complications. It was a good balance of fear and motivation.”
Baker had not planned to specialize in endocrinology, but he quickly realized that his personal diagnosis could help others. Now he often shares his experience with his patients who have diabetes, which he says makes them more comfortable discussing their own problems.
His approach, Baker explains, is to treat everyone as an individual. Trying to neatly classify patients with chronic illness is a common mistake he notices among physicians.
“There’s a lot of misunderstanding about type 1 vs type 2 [diabetes],” Baker says, “and trying to categorize people when sometimes people can’t be categorized. That’s really with any chronic condition; there’s no one size fits all.”
Managing his health is still a time-consuming task. At work, he needs breaks to eat, check his blood sugar, or take insulin. “During the workday seeing patients, I have to also remember that I’m a patient,” Baker says. “I have to be okay with prioritizing my own health. Otherwise I can’t help anybody.”
“I Am Not the Doctor for You”
Chronic diseases such as diabetes or hypertension are familiar to most doctors, and with good management, patients can usually function normally. When chronic conditions become disabling, however, attitudes in the medical field can change.
According to data from the Centers for Disease Control and Prevention and from studies, people with disabilities experience significant disparities and barriers to care. Some of this can be linked to social determinants of health. People with disabilities are more likely to be poor and to rely on Medicare and Medicaid for insurance coverage. But lack of training, unwillingness to provide accommodations, ignorance of legal requirements, and inaccurate assumptions among physicians also play a role.
Dr Lisa Iezzoni
These are themes that Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School, has heard from hundreds of patients with disabilities during the more than 25 years that she has conducted research.
In late 2019, Iezzoni and her co-investigators fielded a national survey of 714 practicing physicians. Only 40.7% reported they were “very confident” that they could provide the same quality of care to patients with disabilities as they do for other patients. And only 56.5% “strongly agreed” that they welcomed these patients into their practices.
The survey was conducted through a series of small focus groups that Iezzoni held with physicians in 2018. These yielded views that were startling, and in some cases, overtly discriminatory:
Doctors complained about the “burden” of caring for a patient with a disability.
They lacked the time or equipment, such as accessible exam tables or weight scales.
They admitted to inventing excuses for why appointments were not available or routine diagnostic tests were not performed.
They described being fearful of lawsuits under the Americans with Disabilities Act (ADA).
The overall message was summed up in one doctor’s statement: “I am not the doctor for you.”
“Doctors are people too,” Iezzoni points out. “And so they reflect the same prejudices and stigmatized attitudes of the rest of the population. It might be implicit, so they might not be aware of it. [But] it might be explicit.”
Ableism in the medical field is all too familiar to Iezzoni. She was diagnosed with multiple sclerosis at age 26 during her first year at Harvard Medical School in the early 1980s. Despite symptom flare-ups, Iezzoni was able to graduate with her class, but many instructors and administrators had little interest in accommodating her physical limitations. In fact, several physicians discouraged her from continuing to train.
Unable to take call, run up flights of stairs, or stand for hours at a time, Iezzoni remembers being told by a senior surgeon that she shouldn’t become a doctor since she lacked the “most important quality,” which was “24/7 availability.” A hospital CEO informed her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means that some people get left by the wayside, so be it.”
Ultimately, Harvard Medical School declined to write Iezzoni a letter of recommendation for an internship. She would never practice medicine. “My career was just truncated from the start,” Iezzoni says. “It never happened because of discrimination.”
She later learned the legal term for her treatment: constructive dismissal.
“The medical school didn’t outright say, ‘Go away. We’re not allowing you to graduate.’ ” Iezzoni explains. “But they made my life so difficult that I did so voluntarily.”
Iezzoni graduated in 1984, before the passage of the ADA in 1990, and she refers to her experience as a “ghost from the past,” a historical reminder of how the legal landscape has changed ― even though the tendency toward bias may not have.
The Fight for Inclusion
Zainub Dhanani, a fifth-year medical student at Stanford University, won’t forget an interview at one of the other schools to which she applied. The interviewer asked how she expected to be in a hospital all day if she had a chronic illness.
“Does it really make sense?” he wanted to know.
The question shocked her in the moment, but now she sees this type of bias as linked to the inequalities that many marginalized groups face in healthcare and beyond. That’s also why she believes physician-patients are crucial to improve the quality of care for people with chronic illness and other groups that face discrimination.
Who else, she wonders, could provide that “reaffirming” experience for patients or have that “unique edge” other than a provider who has navigated the same world?
Dhanani is the executive director and founder of Medical Students With Disability and Chronic Illness, an organization dedicated to empowering these students through advocacy, education, accessibility, and community. The group now has 19 chapters at medical schools across the country.
Dhanani says she has received excellent accommodations from Stanford for her own condition (which she prefers not to disclose here), but all medical schools are not as responsive to students with various physical needs. Her organization offers support and resources to inform these future physicians about their options and rights.
“Disability justice is also racial justice,” Dhanani stresses. “It’s also environmental justice. It’s also gender and sexuality-based justice. Those compounded layers of biases lead to worse and worse levels of care. As a patient, it’s terrifying. And as a future physician, it’s tragic to know that this is something so pervasive and yet so under-addressed in medicine.”
Unfortunately, for some physicians with chronic illness, there are no practical
accommodations that could save their careers in clinical practice.
Amy Stenehjem now works part-time as a health consultant, helping those with chronic illnesses navigate their healthcare systems.
Linda Bluestein offers a similar coaching service to patients with Ehlers-Danlos syndrome (EDS) and other connective tissue and hypermobility disorders. Because of her own EDS, she can no longer practice as an anesthesiologist.
She believes the idea that doctors are “invincible” needs to change. She recalls the time her former group practice told her in no uncertain terms to “never call in sick.”
The stories she hears from her current clients are similar to her own. She can empathize, knowing firsthand the physical and psychological damage these attitudes can cause.
“When I was at my worst physically, I was also at my worst psychologically,” says Bluestein. “We tend to think of them as separate, but they go hand in hand. If we can validate people’s experiences rather than disregard them, it has a positive forward cycle, as opposed to the reverse, which is what usually happens.”
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