When the physician becomes the patient
Physicians with disabilities discuss what it’s like practicing medicine and how their experiences help shape patient care.
Feature
By Alllison Evans, Assistant Managing Editor, October 1, 2024
Physicians are well practiced in caring for people with chronic illnesses and disabilities — both those that are visible and invisible. It is, after all, what they have dedicated years of their life to pursuing. With a pervasive culture of invincibility in medicine, the expectation is often that doctors are superhumans that exist only to care for others.
But what happens when the physician is the one sitting on the exam table? Physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.
About 27% of U.S. adults have a disability of some sort according to the CDC, although fewer than 5% of medical students and only 3% of practicing physicians report having a chronic illness or disability, suggesting that there may be far more physicians with disabilities than it may seem, according to a study in JAMA Network Open.
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Key takeaways from this article:
With a pervasive culture of invincibility in medicine, the expectation is often that doctors are superhuman and only exist to take care of others.
Physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.
About 27% of U.S. adults have a disability of some sort according to the CDC, although fewer than 5% of medical students and only 3% of practicing physicians report having a chronic illness or disability, suggesting that there may be far more physicians with disabilities than it may seem.
Drs. Boos, Stenehjem, and Williams share their stories of being diagnosed with chronic conditions that have shaped how they care for their patients.
The Americans with Disabilities Act of 1990 (ADA) defines disability as a physical or mental impairment that substantially limits one or more of a person’s major life activities. Under the ADA, employers may not discriminate against a qualified individual with a disability and must provide a reasonable accommodation to enable the individual to perform the essential functions of their position, so long as the accommodation does not create an undue hardship for the employer.
The ADA only applies to qualified individuals who can perform the essential functions of their position — employees must have the fundamental education, skills, experience, and other qualifications necessary to perform their jobs.
A physician is not required to disclose their disabilities or chronic conditions to their employer under the ADA. However, an employer’s obligation to provide accommodations only applies to “known” limitations — an employed physician will typically need to provide information about non-obvious disabilities during the process of requesting and implementing a reasonable accommodation.
Autoimmune mayhem
Amy Stenehjem, MD, works as a health care consultant helping clients from all over the United States find answers they need to improve their health and their lives — a medical detective of sorts. But before she became a consultant she worked as a physical medicine and rehabilitation physician, specializing in the care of those with chronic conditions.
“Both of my parents had multiple autoimmune diseases, and so when I was a teenager I was diagnosed with my first autoimmune disease,” she said. During training, she received another autoimmune diagnosis. “Once I started practicing, I received yet another autoimmune diagnosis, so these things just kept piling up on me.”
During her training, Dr. Stenehjem was given some flexibility. “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.”
Dr. Stenehjem discovered that some of the best ways to ease symptoms and manage her conditions were to get plenty of rest and watch her diet. “In practice, I had to be really careful and watch my energy expenditure. I would use up my vacation days during my call week and at the end of the call week so that I could rest up.”
In late 2009, Dr. Stenehjem’s life began to shift dramatically with the presentation of periodic and peculiar episodes of a high fever, rash, swollen lymph nodes, sore throat, and debilitating fatigue. Each “fever episode” was followed by progressive shortness of breath.
After her fourth episode in 2011, her health began to dramatically decline. She became very sick, unable to walk a few feet without severe fatigue, shortness of breath, and dizziness. She also had several other symptoms involving multiple organ systems, including neurological problems, fevers, headaches, rashes, night sweats, and joint pain. She eventually received a diagnosis of dysautonomia, specifically postural orthostatic tachycardia syndrome (POTS), a disease caused by damage to the autonomic nervous system and later a diagnosis from the NIH of autoinflammatory periodic fever syndrome. With the accumulation of autoimmune illnesses and their effects on her body, she was forced to stop practicing medicine.
“Being a physician is a demanding job — both physically and mentally. Particularly in physical medicine and rehab,” Dr. Stenehjem said. “I didn’t realize how physically demanding the specialty could be because the exams are quite extensive and involve a lot of maneuvering of limbs and body parts, and sometimes even helping to transfer patients from a wheelchair to a table. There was some difficulty with keeping up physically.”
Dr. Stenehjem’s immune system was not as robust as the average person, so what one might experience as a minor cold might easily progress to pneumonia for her. “I would miss work more than the average person, which was frustrating for me, frustrating for my patients, and I’m sure it was also frustrating for my colleagues.”
While she believes her colleagues never imposed judgement on her, Dr. Stenehjem admits that she imposed it on herself by her own perception of what a healthy doctor should be. “There’s this feeling that you have to power-through things regardless of illness or obstacle,” she noted, “but there were times I wasn’t able to do that.”
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A diagnosis of Crohn’s disease
Markus Daniel Boos, MD, PhD, FAAD, attending pediatric dermatologist at Seattle Children’s Hospital and associate professor in the Department of Pediatrics at the University of Washington School of Medicine, was diagnosed with Crohn’s disease in 2001 after finishing college and starting his non-medical career in Germany. After receiving the diagnosis while home on a holiday break, he returned to Germany for work and was managed by his GI physician from across the ocean. His experience with seeking treatment for Crohn’s is ultimately what led him to pursue medicine.
“My first year of being diagnosed was really difficult, which was likely due to all the stress of being on my own for the first time, living in a different country, and terrible working hours. I was really sensitive to everything that I ate. The last major flare I had was when I was taking my Step 1 medical licensing exam, which was another super stressful time.” With lifestyle change, his Crohn’s disease is now well managed.
Like many working in medicine, it can be hard to slow down, Dr. Boos noted. “I’m always focused on accomplishing a goal, which means I haven’t always listened to my body. I would feel exhausted and then all of sudden my symptoms would resume.”
As residency program director at the University of Washington, Dr. Boos tries to impart this wisdom to his residents. “Listening to your body is an important life skill and part of maintaining your well being for the long run so you can continue to take care of patients rather than pushing yourself to the limits until you can’t go to clinic because you’re completely spent.”
Historically, medicine has not been set up in a way that is kind to residents. “It would not cross my mind to miss clinic unless I was experiencing something where I really couldn’t get out the door. In my three-year residency, I missed maybe one clinic ever.” Although since COVID, there has been somewhat of a cultural shift in medicine allowing for more recovery time, he added.
“As doctors, we hold ourselves to a standard that we’re not allowed to be anything but models of perfect health,” said Dr. Boos. “While people should be able to vocalize what they need, I think a lot of people do feel shame in asking for any sort of accommodations, particularly in medicine.” While this is acutely felt during residency, in which there is a power dynamic that can complicate the picture, attendings all experience this in not wanting to be perceived by colleagues as a burden or not pulling their weight, he added.
The ADA and physicians with disabilities
The Americans with Disabilities Act of 1990 (ADA) defines disability as a physical or mental impairment that substantially limits one or more of a person’s major life activities. Under the ADA, employers may not discriminate against a qualified individual with a disability and must provide a reasonable accommodation to enable the individual to perform the essential functions of their position, so long as the accommodation does not create an undue hardship for the employer.
“Under the ADA, employers with 15 or more employees may not discriminate against qualified individuals with disabilities across all of their employment practices — that includes during recruitment and hiring, job assignments, compensation, promotions, and with layoffs and terminations,” said Jason Qu, JD, a health care attorney at Powers Pyles Sutter & Verville PC. “Employers must also take steps to ensure that employees with disabilities can enjoy the same benefits and privileges of employment as those enjoyed by employees without disabilities.”
“The definition of a ‘disability’ under the ADA encompasses any physical or mental impairment that substantially limits a major life activity,” said Qu. While this definition does include, for example, forms of physical disability that may be obvious to the employer, it can also include a range of chronic conditions, mental impairments, or other less obvious conditions that may nevertheless be covered under the ADA.
“While employers and employees often focus on the ADA, it’s important to remember that state or local antidiscrimination laws often provide additional protections for individuals with disabilities in the workplace,” said Qu. “These laws may apply to employers with fewer than 15 employees or might otherwise provide more robust or expansive protections than the ADA.”
‘Reasonable’ accommodations
“The ADA only applies to qualified individuals who can perform the essential functions of their position, meaning that employees must have the fundamental education, skills, experience, and other qualifications necessary to perform their jobs,” said Qu. However, under the ADA, employers must provide employees with known disabilities “reasonable accommodations” that will allow them to perform the essential functions of their position.
“It’s important to remember that a reasonable accommodation does not mean modifying the essential functions or basic qualifications of the job itself — instead, a reasonable accommodation is a change or adjustment to elements of the job, or to the work environment, that provides an employee with equal opportunity to perform the essential functions of their job,” added Qu.
“In a physician practice setting, reasonable accommodations may include — depending on the nature of an employee’s disability — changes to workplace facilities to make them more accessible, acquiring or modifying equipment or devices, changing or augmenting work processes, eliminating or restructuring marginal or incidental job functions, or providing alternative work schedules or policy exceptions,” he said.
Employers are not required to provide reasonable accommodations that cause an undue hardship, meaning accommodations that are unduly costly, extensive, disruptive, or that would fundamentally alter the nature or operations of the employer’s business, said Qu. “Employers may also refuse to accommodate individuals under the ADA in situations where their disability would pose a direct threat to health or safety — this is particularly relevant for employed physicians, as this analysis can include threats to both patients and other workforce members.”
Disclosing disabilities and confidentiality
“A physician is not required to disclose their disabilities or chronic conditions to their employer under the ADA. However, an employer’s obligation to provide accommodations only applies to ‘known’ limitations, meaning that an employed physician will typically need to provide information about non-obvious disabilities during the process of requesting and implementing a reasonable accommodation,” said Qu. “At this stage, an employer can also ask for medical documentation if doing so is necessary to understand the nature, severity, and duration of the impairment and the extent to which the impairment limits the employee’s ability to perform job functions.”
Employers must keep disability-related information confidential under the ADA. “Specific information about a physician’s disabilities should be kept in a separate, secure medical file and accessed on a strictly need-to-know basis by individuals who are directly responsible for assessing and approving the physician’s reasonable accommodations. Information about the accommodations themselves may also be provided to other managers or supervisors as needed, or may be obvious in the workplace, but specific information about the physician’s disability status, underlying conditions, or medical history must still be protected and disclosed only when necessary,” said Qu.
Masking the pain
In his second year of residency, Garrett Williams, MD, FAAD,* began to experience joint pain and swelling, which had gone undiagnosed for quite some time. “I was eventually diagnosed with an autoimmune arthritis in the category of peripheral spondyloarthritis. With this type of arthritis, your immune system attacks your joints. In my case it was my feet, knees, hands, wrists, and ankles.”
“I had a lot of pain just walking, which is tough when you’re working in a hospital,” Dr. Williams said. “I also had issues using my hands, which as you can imagine in dermatology is difficult.” At one point, he was walking with a boot and another time he had a knee scooter just to be able to get around the hospital.
“It was really tough being diagnosed with the condition because you’re really busy as a resident, and I don’t think there’s a lot of understanding for chronic pain conditions,” he said. “As a resident, you don’t have the time to figure out what’s going on.” It took years for Dr. Williams to get the right treatment.
When Dr. Williams worked at a VA hospital, the parking lot was far from the clinic, so he requested accommodations. “For an able-bodied person, the walk took 15-20 minutes. I remember asking if it was possible to get a closer parking spot, be allowed to come to clinic slightly late, or see fewer patients so that I could move more slowly in clinic. I remember being met with a lot of ‘we can’t do that’ responses. I believe I was granted a nominal accommodation to see fewer patients, but in reality, that never happened.”
“There was a period in residency, before I went on treatment when I wasn’t able to move my hands well, so I did request not to do procedures at that time, although I happened to be on a rotation that was not procedure-heavy. I was able to work with my chief resident and we put me on a schedule that was not so intensive in movements.”
“I have a lot of difficulty with typing. That’s probably the worst activity for me. I just deal with the pain. It doesn’t limit what I can do, but I experience the symptoms,” he said.
Eventually, Dr. Williams moved into a small, private practice setting where he was faced with the challenge of deciding whether to disclose his disability to his employers. “I didn’t know how they would take it. Dermatology does require moving very quickly, and because I couldn’t, that might hurt their bottom line. I made the decision not to say anything.”
After being in the care of a rheumatologist and taking a biologic, his symptoms are now better controlled. “I’m on the same medication that my patients are on for their skin diseases, but I still go through life with chronic pain in my joints.”
“I do think there’s a culture in medicine, not just dermatology, that we are invincible as people, and my experience has shown that there isn’t a lot of understanding or tolerance for individuals with disabilities,” Dr. Williams said. “It’s ironic that we work in this field where we deal with these patients, but there isn’t a lot of compassion for the physicians who are dealing with these same disabilities and conditions.” *Editor’s note: This is not the source’s real name as they wish to remain anonymous.
Empathy and trust
Although Dr. Williams has struggled with the options of disclosing his illness and how that might affect his practice, his experience has changed his practice style in imbuing more genuine empathy for his patients. “There are many people who deal with the condition I have or other types of arthritities, and it’s really special when you are able to say, as a physician, that you deal with the same things that your patients do.”
Dr. Stenehjem agreed. “My diagnoses definitely changed how I worked with my patients and my understanding of the impact of the disease on them. Some people may look at a diagnosis, like psoriasis, and say ‘that’s too bad,’ but not really understand the actual day-to-day, hour-to-hour, minute-to-minute impact on someone’s life.”
When someone says they’re fatigued, Dr. Stenehjem explained, “it’s not that they’re super tired or didn’t sleep well. It can mean that they physically can’t get out of bed. That’s what people with chronic illness often deal with on a daily basis.”
“When I share my personal experiences with patients, there’s a stronger sense of trust,” Dr. Williams said. “Also, as a patient of a very complex health care system, I’m a more valuable advocate for my patients because I’m able to instruct them on how to navigate their own insurance plan and pharmacy benefits.”
Dr. Williams also finds that he is able to better counsel his patients on certain biologics. “Now that I’m on a biologic, if a patient is apprehensive about starting the medication, I’m able to talk about my personal experiences. More than anything, it’s comforting for my patients to hear my experience and know that things will be okay.”
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Connecting with patients
While Dr. Boos’ condition doesn’t affect his ability to practice medicine anymore, his experiences have been integral to how he relates to patients. He has been able to gain firsthand knowledge of the patient experience and translate that to better patient care in his own practice. “The doctor as patient — it changes your view of doctoring once you’re on the receiving end of both good and bad care. I see lots of kids in clinic who have IBD because they may have been put on adalimumab or infliximab to treat their IBD, which paradoxically can cause psoriasis,” he said. “Even though I was diagnosed when I was 21, I try to put myself in these kids’ shoes.”
While Dr. Boos doesn’t regularly talk about his own diagnosis with all his patients, he always shares it when he has patients with IBD or ulcerative colitis. “It’s important for my pediatric patients to know that I have this, and I was still able to do all of the things I wanted to in my life. I let them know that their life may be different, but it won’t be worse. They’ll just need some extra support and have more doctors’ visits than anticipated.”
Receiving a new diagnosis can be very isolating. As a physician who also identifies as gay, Dr. Boos looks at disability as another layer of visibility. “It’s just another way of me being visible. Our patients appreciate it when they can connect with us. That representation that we can give patients really matters.”
“Being a patient is humbling in a way that hopefully translates into the care we provide our patients.”
With that patient connection comes increased trust. “Maybe the patient I’ve identified with will now be more likely to apply the creams or take immunosuppressive medications for their psoriasis.”
Dr. Boos also feels more empathy and patience when dealing with patients. “When I was first diagnosed with Crohn’s disease, I was given the option to be on methotrexate, but I didn’t really want to be on that if I didn’t need to be. When I have parents who shy away from certain treatments, I don’t get frustrated because I understand where they’re coming from.”
Dr. Boos acknowledges the time pressures in medicine, which can make forming these connections and relationships with patients feel daunting. “We have to see so many patients a day, make sure we’re documenting everything, and take so many calls each day. Having those extra conversations may seem like a lot of work, but on the other hand, I get to feel like I’ve made a difference for my patients and families, which makes me really glad I’m a doctor.”
“Being a patient is humbling in a way that hopefully translates into the care we provide our patients,” Dr. Boos added.
