Disclosing and Treating Invisible Disabilities

Estimates suggest that only about 1% of medical students with major depressive disorder disclose it as a disability. Throughout the medical school admissions process, training, and licensure activities, students and physicians with histories of mental illness face structural barriers that result in discrimination and discourage disclosure and care seeking. These patterns of exclusion mirror the broader underrepresentation of persons with disabilities in medical schools: for example, in 2019 only 4.6% of students in US allopathic medical schools reported disabilities of any kind.

As HPOD Executive Director Professor Michael Ashley Stein; Dr. Omar Sultan Haque, a faculty member at the Harvard Medical School's Program in Psychiatry and the Law; and Amelia Marvit observe in The New England Journal of Medicine, structural barriers inhibit disclosure, with deleterious effects on physicians with disabilities' access to care. Licensing questions related to current or past diagnoses or treatment for mental disabilities that don’t affect physicians’ current functional abilities are irrelevant to their professional competence and therefore illegal under U.S. disability rights laws. Yet, a 2016 national analysis of medical licensing applications revealed that two-thirds of states have application questions that do so. Such questions appear correlated to barriers to care. The same study found that physicians in these states were more likely than physicians in states with Americans with Disabilities Act-compliant licensing procedures to be reluctant to seek formal medical care for a mental disability because of fears about repercussions. Indeed, beyond the ableist expressive effects of such questions, physicians face tangible risks of unmerited license investigations, which require substantial time, energy, and money for legal representation and clinical consultations.

The kinds of ableism evidence in licensing questions also pervade clinical care, with pronounced effects on people who present disorders for which there are no biomarkers (i.e., measurable indicators of the presence or severity of a disease) available for clinical use. This category of disorders without biomarkers includes many difficult-to-measure disorders and most medically unexplained symptoms, such as functional neurological disorders, fibromyalgia, chronic fatigue syndrome, and chronic pain syndromes. Although these disorders together contribute to up to roughly half of primary care and specialty clinic visits, a significant fraction of emergency department visits and hospital admissions, high health care costs, and markedly impaired quality of life for patients and their families, stigma too often creates barriers to effective treatment.

As Professor Stein joined HPOD associate Dorothy W. Tolchin, an Instructor in Physical Medicine and Rehabilitation at the Harvard Medical School (HMS) and Benjamin Tolchin of the HMS Center for Bioethics to advise clinicians on how to overcome stigma in the AMA Journal of Ethics:

In addition to assigning a diagnosis, prescribing evidence-based treatments when available, and referring patients to available experts and resources, clinicians should also provide thoughtful documentation in notes and in the medical literature to foster culture change within the health care system. In their writing, as in their speech, clinicians should model person-centered language—unless a patient prefers otherwise—and an empathic, compassionate attitude toward individuals with difficult-to-measure disorders and medically unexplained symptoms. By taking these steps, clinicians can enhance patient welfare and empower patients to make meaningful health care decisions, in line with the bioethical principles of beneficence and respect for autonomy.

Only with concerted efforts to recognize and combat the pervasive manifestations of ableism and stigma in health care systems will both physicians and patients alike be able to reduce the persistent disparities in health care faced by persons with disabilities.