Study Identifies Reasons Why Those with Disabling Endometriosis Often Struggle to Receive Disability Payments

May 28, 2024

A wooden gavel rests on a white marble surface

WASHINGTON, DC (May 28, 2024)— Endometriosis can be disabling, but the US system often denies disability payments to those who suffer from this chronic condition. A study selected as the Editor’s Choice in the latest issue of Women’s Health Issues reports on the barriers that endometriosis patients can face in receiving disability payments, from delayed diagnoses to judges’ expectations for consistent symptoms and use of treatments like hysterectomy.

Women’s Health Issues is the official journal of the Jacobs Institute of Women’s Health, which is based at the Milken Institute School of Public Health (Milken Institute SPH) at the George Washington University.

The study’s first author, Martha Grace Cromeens, JD, PhD, RN, is a postdoctoral research fellow at the University of Washington School of Nursing in the Research in Nursing and Global Health (RiNGH) training program. She received support for this research from the University of North Carolina at Chapel Hill School of Nursing while completing her PhD and from Indiana University School of Nursing as a postdoctoral fellowship. Cromeens and her colleagues identified and analyzed the text of federal appeals of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) claims that included endometriosis as an impairment. They identified 87 cases and calculated that an average of more than eight years elapsed between the time when the claimants first experienced disabling symptoms to the time when the appeals courts issued their decisions. The appeals courts decided in favor of the plaintiffs 34 times (39% of the identified cases).

Insufficient access to providers who offer high-quality care for endometriosis was a barrier to being granted disability payments, the authors’ analysis found. They note that courts and administrative law judges (ALJs) preferred surgical diagnoses and “found diagnoses based on patient-reported symptoms unpersuasive.” However, Cromeens and colleagues explain, receiving diagnoses from providers can be challenging for those who have limited financial resources, face discrimination from providers, or experience the multi-year diagnostic delays that are common for endometriosis cases in the US.

The authors also found that judges often denied disability claims involving endometriosis because they expected symptoms to be consistent — despite the fact that endometriosis symptoms typically fluctuate with menstrual cycles — and claimants to demonstrate the severity of their condition by trying radical treatments such as hysterectomy, which can have serious side effects and does not always eliminate symptoms. In one case, the authors report, a court and ALJ “viewed one person's choice to have children and refuse birth control (i.e., medical treatment) as contradictory to their symptom testimony.” Cromeens and colleagues explain that "a court’s expectations that a claimant/plaintiff forgo childbirth for a treatment not guaranteed to work encroaches on their reproductive decision-making and denies them their humanity.”

The authors concluded that “the evidentiary standards for disability claims are ill-suited for conditions such as endometriosis that are difficult to diagnose and have cyclic symptoms.” They write, “The health care, policy, and legal systems can leverage the findings in this study to create a more equitable disability application and review system for those with chronic pain conditions such as endometriosis.”

“We know that medical research often gives too little attention to diseases that disproportionately affect women,” said Karen McDonnell, Editor-in-Chief of Women's Health Issues and associate professor of prevention and community health at Milken Institute SPH. “This study provides important evidence that the US disability system also requires a better understanding of diseases such as endometriosis in order to ensure that those with disabling conditions can get the support they need.”

Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis” has been published in the May/June 2024 issue of Women’s Health Issues.