Fibromyalgia and the Rheumatologist: Testing Tolerance of Uncertainty and Capacity for Empathy
This issue of Healio Rheumatology features a robust discussion of the challenges posed by fibromyalgia by a group of leading experts in the field, including Drs. Choy, Clauw, Gota and Mackey, who remind us of the challenges of one of the most commonly encountered disorders seen in the practice of rheumatology. For us general rheumatologists — those of us who do not specialize in this disease — fibromyalgia presents a consummate challenge to both our clinical and professional persona.
The first challenge is clinical, which I believe is generated in large part by the general uncertainty surrounding the disorder itself. Unlike many other rheumatic diseases with seemingly robust diagnostic criteria and biomarkers, such as ACPA and ANCA, we have none for fibromyalgia. The tools used to make the diagnosis are based largely on patient-reported variables and hence tend to be ‘soft’ in comparison to many other rheumatic diseases.
This heavy reliance on patient-reported variables seems to pejoratize fibromyalgia for some reason. Consider when we see an RA patient with fibromyalgia who has a high RAPID3 score indicating active disease, perhaps seems somewhat down in their mood and has a low swollen joint count. Probably underlying fibromyalgia, right? How many of us would reflexively think this is not the ‘real disease’ such as active RA?
I find this phenomenon of interest, particularly in the context of instructing trainees, for in reality our patient’s quality of life is often no less compromised by their fibromyalgia than their RA. I will add that my certainty of this has only increased as a result of our routine use of PROMIS scales in our clinic, where I have anecdotally noted that the patients with the lowest global scores of qualities of life are not my RA, SLE or vasculitis patients, but rather those who phenotypically have fibromyalgia or chronic fatigue-like illnesses. To me this is strongly supportive of the importance of these disorders and the need of these patients to receive our best care and understanding.
Disorders like fibromyalgia and related disorders such as chronic fatigue syndrome have long been shrouded in uncertainty which can have many additional adverse effects. Patients with these diagnoses have often been pejoratized and even postulated to have disorders that are ‘not real.’ Furthermore, it has also been demonstrated that chronic exposure to uncertainty among caregivers can contribute to stress and burnout, and so perhaps it is in part, that this uncertainty makes us weary when we see many patients with fibromyalgia.
I have not personally been immune to this effect, particularly in my earlier years and I now am asking what can be learned from observing this phenomenon and how can we grow to be better healers. Even more importantly, consider uncertainty from the perspective of our patients — how many fibromyalgia patients have been given so many incorrect diagnoses or even non-diagnoses? Thus the axiom of ‘it’s difficult to cope with a situation which you cannot understand’ comes to mind and I tell my patients this often.
I believe that an important principle underlying the practice of medicine in general is the need for empathy. I define empathy as a cognitive trait that combines our capacity to understand the plight of our patient and, most importantly, our ability to transmit this perspective back to the patient. I am not speaking of the emotional dimension of sympathy — which many confuse with empathy — which can be draining to us. Sympathy when present in excess is capable of contributing to diagnostic errors, emotional exhaustion and even anger when we become emotionally frustrated. Empathy is predominantly cognitive and does not drain us but enriches us and our patients. Empathy has been correlated with improved patient satisfaction as well as better care and clinical outcomes.
The challenge for us as a profession is to learn how to build and buffer our empathy. This is a topic in itself, but I am heartened that for the first time, empathy was the subject of a major clinical symposium at the 2017 ACR meeting in San Diego. The mere fact that we as a rheumatology community have come together to discuss empathy is a major step forward. This is all important because in addition to the obvious advantages of empathy noted above, additional studies have demonstrated that practitioners who are empathic have less burnout and more professional job satisfaction, and thus we all should want to have it!
For those of us who teach, role modeling empathy in the care for patients with fibromyalgia is critically important. Demonstrating that we can give good care to such patients and walk away unaffected can be clarion for young clinicians searching for how they will position themselves in their relationship to these patients. I am best capable of doing this when I am happy and having a good or hopefully a great day and least capable when I am stressed, when my buffers for coping with the uncertainties of life are at their lowest. Ensuring we are working at our best is influenced by multiple factors, especially by seriously engaging in self-care activities and maintaining work-life balance.
Finally, avoiding pejorative comments about those with a disorder that has no simple solution is even more important. Trainees pay attention to what we informally say and do, creating what is often referred to as the ‘hidden curriculum.’ I will close by telling you how much respect I have for those, like our discussants, who have focused major portions of their careers on this disease. For the rest of us, who have not, we must do our best to help our fibromyalgia patients by being at our own personal best so we can provide the best care and caring we are capable of.
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- Leonard H. Calabrese, DO, is the Chief Medical Editor, Healio Rheumatology, and Professor of Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, and RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic.
Disclosure: Calabrese reports serving as an investigator and a consultant to Horizon Pharmaceuticals.