For the three rheumatologists highlighted in this article, that is exactly the case. Each of these doctors has lived with a rheumatic disease for many years and, simultaneously, has brought the experiences and lessons learned from having a rheumatic condition to bear on their medical practice. Their stories are varied and highly personal, but they share themes and messages that these rheumatologists wish to impart to patients and colleagues alike.
Insights into JIA
Susanna Jeurling’s parents knew something had changed in their daughter when she was 11 years old. That summer, Susanna had experienced frequent bouts of fatigue and would often stay in bed all day, which was not normal for her. Susanna had previously been an active child, routinely practicing figure skating and participating fully in physical education class at school. Now, not yet even a teenager, her ability to perform physical activities had diminished greatly.
Susanna’s parents brought her to see a sports medicine physician, but no clear diagnosis could be found. She continued to suffer and sleep all day, with each week worse than the last.
Susanna soon developed bilateral knee swelling, which prompted a referral to a pediatric rheumatologist. It took a long time to get an appointment with this specialist, but she was ultimately seen at Children’s National Hospital, Washington, D.C. It was the pediatric rheumatologist who diagnosed Susanna with juvenile idiopathic arthritis (JIA).
She began undergoing recurrent aspirations and corticosteroid injections to the knees. She was started on a prescription nonsteroidal anti-inflammatory drug (NSAID) and witnessed significant improvement in her joint symptoms. Ultimately, her disease became manageable, and she continued her care with an adult rheumatologist when she turned 18.
Susanna went on to attend medical school, and there was little doubt in her mind what field she would pursue after graduation. “I’ve wanted to be a rheumatologist ever since I was diagnosed with JIA,” she tells The Rheumatologist. “I have always been passionate about helping others manage their own autoimmune diseases as best as possible.”
Having earned her medical degree from New York University Grossman School of Medicine, Dr. Jeurling practices with Falls Medical Specialists, Lutherville, Md., and notes on her website that she has JIA. She explains that many patients, particularly younger patients transitioning from pediatric to adult care, seek her out as a physician, in part because of her own experiences with illness.
Dr. Jeurling understands how hard it can be to transition to a new provider. She considers herself fortunate because she had a mother who was supportive and very involved in her care, but who also allowed and encouraged her to be the primary person determining all medical decisions. This is not always the case when a child develops a rheumatic disease. For better or worse, extensive parental involvement can sometimes make it hard for patients to become their own advocates once they are adults.
When Dr. Jeurling sees patients, she keeps in mind her strong conviction that a lot of the healing power in medicine comes from the therapeutic relationship. Having a doctor you know cares about you and is taking care of you as a whole person is very meaningful. She works extra hard to maintain eye contact with the patient and speak directly to them. Family members are frequently involved in discussions, but Dr. Jeurling makes sure it is the patient who feels their voice rises above all others.
Sometimes, Dr. Jeurling realizes that not much is changing in terms of the treatment plan, yet the patient expresses appreciation for the way in which they feel looked after and emotionally supported.
Dr. Jeurling can also empathize with her patients’ desire to know why they have an illness.
“I try to be sympathetic in their quest for answers,” she says. Although she may not be able to say why a given patient developed a rheumatic condition, she feels she can at least validate the rationale they have for asking the question.
Dr. Jeurling is similarly aware of how patients feel when being advised to take a medication long term, including the fear of side effects. “It is normal for people to have an aversion to taking medicine in general,” she notes. Realizing that a medication that is never consumed by the patient has no chance of working, she tries to meet patients where they are and never force the issue. Instead, she is willing to sit, listen and make sure patients’ concerns are adequately addressed.
One challenge of both having a rheumatic disease and caring for patients with a rheumatic disease is the temptation to use one’s own experience with symptoms as a barometer. When Dr. Jeurling sees a patient who has had a severe course with their disease, she sometimes catches herself thinking, I’m glad that did not happen to me. Other times, she may observe a patient who is having disease manifestations similar to those she has experienced, but who reports pain that may be more than what she herself would rate. In both of these cases, Dr. Jeurling works hard to recognize these natural tendencies to compare a patient’s experience with her own, and she is mindful of not letting her own bias interfere with providing each patient with what they need as an individual.
Insights into Relapsing Polychondritis
Marcela Ferrada, MD, a clinical associate professor at the University of Maryland School of Medicine, Baltimore, can identify with Dr. Jeurling’s journey, although her bout with illness began later in her life. Born and raised in Colombia, Dr. Ferrada went to the U.S. National Institutes of Health (NIH) in 2015 to complete training in critical care medicine and infectious diseases. Shortly thereafter, she started to notice symptoms, including coughing fits (some so severe that she fractured a rib), fatigue, and joint pain and stiffness that only improved with high-dose corticosteroids.
She was referred to James Katz, MD, a senior research physician at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), NIH, who asked her, “Do you have pain in your ears when you wear a hat?” and “Does your nose ever get sore or red?” Dr. Ferrada had, indeed, experienced these symptoms, leading Dr. Katz to diagnose her with relapsing polychondritis (RP).
The diagnosis not only led to Dr. Ferrada starting treatment for this condition, but it also convinced her to change her course in medicine and switch to training at the NIH in rheumatology. She continued to work at the NIH as a physician-scientist until this past year and is now devoting much of her time to patient advocacy and other efforts.
Dr. Ferrada feels the most passionate about this particular topic—advocating for patients with RP. One of her main goals has been to increase public awareness of RP. She does this by speaking widely, not only at major medical conferences, but also to individual patients and patient groups.
Given her upbringing in Latin America, she has worked hard to develop patient information materials in Spanish and help disseminate these widely; her goal is to translate these documents into even more languages and circulate them around the globe. This is important because, as Dr. Ferrada can attest to herself, the symptoms and signs of RP can be unusual and the time to diagnosis may be long for patients without access to experienced rheumatologists who can recognize the condition.
Dr. Ferrada is also able to comprehend aspects of the disease that are hard to put into words. She understands that the fatigue associated with RP can be crippling. “It literally feels like someone has flipped a power switch to off, and you cannot move or get out of bed,” she explains.
There is also a mental fog that can be upsetting, particularly for individuals who are normally high functioning and require the energy and mental fortitude to complete their professional and personal activities of interest. “All rheumatologists should take these symptoms seriously,” Dr. Ferrada advises, “since fatigue and mental fog can have a huge impact on a person’s quality of life.”
When Dr. Ferrada sees a patient with RP in clinic, she is very open about her own diagnosis. She takes the time to review the patient’s history and also spends time talking patient-to-patient with them. She expresses the ways in which she empathizes with what they are going through while understanding that each person’s reaction to illness may be different.
In her own case, Dr. Ferrada has achieved significant success and renown in the world of rheumatology, in no small part due to her own formative experiences and family.
“My father is a trauma surgeon, and I think his attitude and personality have rubbed off on me and given me the ability to persevere,” she says.
She also is an incredibly grateful person, one who is appreciative of the opportunity to help patients with the condition that she herself has and for the chance to advance research on this disease.
Despite her ability to be highly motivated and active, Dr. Ferrada makes it clear to patients that no productivity standard exists that they must meet. She explains that what each person does in their own life is their own decision, and she tries to show patients they have options.
Ultimately, Dr. Ferrada seeks to help each individual patient with RP achieve success by whatever measure they feel is most appropriate.
Insights into Ankylosing Spondylitis
Eric Gapud, MD, a rheumatologist in Silver Spring, Md., who sees patients through the Vasculitis Translational Research Program at NIAMS/NIH, did not know when he started medical school that, in addition to studying disease, he would experience it himself. At age 22, he began to have episodes of recurrent uveitis. This led to genetic testing showing that he is positive for HLA-B27; he was subsequently referred to a rheumatologist. Only then did Eric realize that the back pain and limited range of motion in his neck, which he had experienced since age 13, were actually telltale signs of the condition with which he was diagnosed: ankylosing spondylitis.
Now, years later, Dr. Gapud recalls the saga as “a humbling experience.” He had been so excited to start medical school and embark on his career as a physician while meeting new friends and forming unique social networks. Instead, he was grappling with the implications of a diagnosis that he did not yet understand and felt, in many ways, isolated him from his classmates. He was at a loss for how to deal with this new part of his life.
Treatment began with high-dose glucocorticoids, which caused many unwanted side effects. “I had never been on any medications before,” he explains, “and I was frustrated by my situation.”
Not long after his diagnosis, etanercept became the first biologic medication approved for the treatment of ankylosing spondylitis. The availability of this biologic medication was at once reason for optimism and cause for potential concern. “I was scared by the idea of starting a medication that was so new to market,” he notes. Ultimately, he began this treatment and did see improvement in his back pain symptoms. The uveitis improved as well, although it continues to be an episodic issue.
Dr. Gapud can now appreciate that, although living with ankylosing spondylitis can be challenging, having this disease can also serve as an asset when he approaches the care of patients. His experience allowed him to reflect on what it means for a patient to be dealing with a new diagnosis: There is a whole new language to be learned. They must become adept at explaining their symptoms in ways that their doctor can comprehend, and they have to learn to adjust their expectations to what is reasonable and possible.
Having been a patient himself, Dr. Gapud makes a concerted effort to slow down when he is working with patients and demonstrate sincere empathy. “Many patients may feel as if nobody understands them and what they are going through,” he explains. There are often considerations in their care that patients either can’t express—they may not have the language to do so—or do not know are relevant to their discussions with their doctor. For example, when a rheumatologist thinks about treatment options, they may primarily think about hard outcomes and efficacy. Each individual patient, however, may need to weigh the potential benefits of a medication with the opportunity costs—time, money, effects on scheduling and travel, and the pain associated with frequent injections.
Dr. Gapud is willing and able to share his diagnosis with patients in the clinic, and he often finds doing so helps make his opinion more accessible and relevant to patients. He values greatly the importance of the psychosocial aspect of medicine, often thinking about and discussing the emotional impact that an illness may have on a person.
Above all else, Dr. Gapud believes that trust is key to a healthy therapeutic relationship between patient and doctor. He says this begins with the most important skill a physician can possess: the ability to truly listen. Listening is a skill that must be learned and practiced, and how one listens—reading between the lines, thinking critically about the words that a person chooses to express themselves—is informed by being thoughtful in each and every patient encounter.
In Sum
The stories of Drs. Jeurling, Ferrada and Gapud serve as powerful examples that rheumatologists can learn from, gaining wisdom and insight into the optimal care of our patients.
Jason Liebowitz, MD, is an assistant professor of medicine in the Division of Rheumatology at Columbia University Vagelos College of Physicians and Surgeons, New York.
Reference
- McMutrie J. Interview with Abraham Verghese. The San Francisco Chronicle. 14 Mar 2010. https://www.sfgate.com/books/article/Interview-with-Abraham-Verghese-3196608.php.
