What Not to Say to People With Complex Chronic Illness

For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.

To address this, Svetlana Blitshteyn, MD, a neurologist who is the director of Dysautonomia Clinic at Jacobs School of Medicine and Biomedical Sciences, University of Buffalo, and Nancy J. Smyth, PhD, professor and former dean at the School of Social Work, University at Buffalo, both in Buffalo, New York, co-authored a paper entitled Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders. In it, they provided a table of 16 “never words” that clinicians should avoid saying to patients, explanations of why the phrases are problematic, and proposed alternatives for more effective and empathetic communication.

Blitshteyn spoke with Medscape Medical News about the paper. The conversation has been lightly edited for clarity.

Medscape: What was the impetus for writing this paper? 

Blitshteyn: The topic of physician-patient relationship and communication strategies to ensure therapeutic relationship is something I thought about writing for a long time, but never got around to it until Smyth contacted me to collaborate on a joint project. She has years of experience with patient engagement, teaching patients how to communicate about invisible illnesses, and helping people with long COVID to communicate and advocate with healthcare professionals and employers. That seemed like a perfect collaboration considering my many years of experience as a neurologist working with patients with complex chronic disorders, such as dysautonomia, ME/CFS, and long COVID.

Who is the target audience for the paper? 

Physicians of all specialties and other healthcare practitioners, such as psychologists, physical therapists, social workers, nutritionists, and others.

What are the main themes of the ‘never words’ in your table? 

We focus on common phrases that clinicians often tell patients, but which can be nonproductive, inappropriate, and frankly, damaging to the physician-patient relationship. The never-words can be divided in themes like these: 

1) Erroneous assumptions about patients and patients’ lived experience 

2) Misattribution and misdiagnosis with psychological disorders 

3) Comparison with other more-defined disorders with confirmatory diagnostic tests, US Food and Drug Administration–approved therapies, and available medical training 

4) Communicating from the paternalistic standpoint and assuming that the patient’s experience, knowledge, and understanding are substandard or invalid

What are some specific examples? 

Clinicians might say to a person with a hidden illness, “You don’t look sick.” We explain that a patient can feel very sick despite looking healthy. Instead, we simply recommend refraining from commenting on a person’s appearance.

Another example is, “Good news. Your tests are all normal.” We explain that this might not be viewed as “good news” to a patient who still feels sick. An alternative is, “The tests we have run so far are not showing any abnormalities, and the good news is we have excluded certain conditions based on the results of those tests.” 

Rather than telling a patient that “we don’t have any treatment for your illness,” we recommend saying, “We will talk about the available treatments we have that can make you feel better.” 

We also recommend against attributing the person’s illness to psychological factors, fitness levels, or hormonal status. People with complex chronic illness may have comorbid depression, anxiety, and exercise intolerance, but these comorbidities aren’t the causes of the complex chronic illness.

Clinicians are increasingly aware of the importance of language when it comes to other medical arenas such as cancer, obesity, and diabetes. What is similar/different about complex chronic illnesses? Do you aim to change attitudes as well as language?

Traditionally, complex disorders such as ME/CFS, fibromyalgia, and dysautonomia were not given the same consideration, medical training, or research funding as other chronic disorders. There was an erroneous assumption that these disorders, and now long COVID, are based in psychiatric or psychological etiologies unlike other chronic diseases such as diabetes or heart disease that are “legitimate.” 

This dichotomy permeated our medical training where trainees were taught to not spend too much time on the latter category of patients and refer them for psychological care. This lack of training, coupled with insufficient research investment in these disorders, resulted in significant shortage of clinicians and scientists knowledgeable in these disorders. With this paper, we hope to highlight the wide gap in communication and attitudes among clinicians and other healthcare practitioners toward a patient population that has been largely neglected by the medical community, but that deserves equally effective and compassionate care as patients with diabetes or heart disease.

I think that given the prevalence of long COVID in the general population and among healthcare practitioners themselves, attitudes are changing for the better, and knowledge gaps and diagnostic delays in the care of patients with complex disorders are being reduced. Still, some clinicians continue to utilize old thinking and outdated narratives by attempting to psychologize these disorders.

There is no doubt that neurologic and psychiatric manifestations of post-COVID sequelae are prominent, but this is part of long COVID pathophysiology, not a product of the patient’s attitudes, a lack of positive thinking, or weak character. One cannot will themselves out of long COVID any more than one can will themselves out of diabetes.

Having said that, given a lack of effective treatment and significant disability and functional impairment, psychological, social, and physical therapies are very important adjunct therapies to be used in addition to treatment, not instead of it.

In the paper you discussed tools called Critical Care Communication; the VitalTalk skills package; the Relationship, Establishment, Development, and Engagement model; and the Serious Illness Conversation Guide. How can these help in communication around complex chronic illness?

These communication strategies have been developed for physicians to effectively communicate with patients undergoing intensive care or end-of-life care or in general medical practice. We believe that developing a similar validated model of communication between healthcare practitioners and patients with complex chronic illness is necessary.

For clinicians who are unfamiliar with the evidence for a biological basis behind ME/CFS, long COVID, and other complex chronic illnesses, can you recommend sources that summarize what is known thus far?

For ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

For long COVID: Long COVID science, research and policy

For dysautonomia: Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of autonomic dysfunction in patients with post-acute sequelae of SARS-CoV-2 infection (PASC) and Dysautonomia, Hypermobility Spectrum Disorders and Mast Cell Activation Syndrome as Migraine Comorbidities

Any other important messages for clinicians who care for people with complex chronic illness? 

I think it’s important for clinicians of all specialties to get educated on how to recognize, diagnose, and manage patients with ME/CFS, long COVID, and dysautonomia because there are simply not enough specialists to absorb a rising number of these patients. The first step is to understand and acknowledge that these disorders are not psychologically based and are not functional in etiology.

Blitshteyn had no relevant disclosures.

Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape Medical News, with other work appearing in the Washington Post, NPR’s Shots blog, and Diatribe. She is on X @MiriamETucker and BlueSky @miriametucker.bsky.social.