People with endometriosis commonly face obstacles and misconceptions about disease, diagnosis and treatment. These obstacles are especially burdensome when navigating Social Security disability claims—a system relied upon by over 8 million Americans. (Social Security Administration, 2022)
Nursing scientist and postdoctoral research fellow with UW School of Nursing Research in Nursing and Global Health, Dr. Martha Grace Cromeens (she/her), JD, PhD, RN, recently co-authored a groundbreaking study demonstrating evidence of the disparity in how endometriosis disability claims are treated in federal court appeals.
The study, published in Women’s Health Issues, the official journal of the Jacobs Institute of Women’s Health, analyzed 87 SSDI (Social Security Disability Insurance) and SSI (Supplemental Security Income) claim appeals related to endometriosis and found that these claims are systematically disadvantaged, particularly among those with less access to care.
The findings showed that the courts “found subjective reports of symptoms insufficient evidence of impairment…” and, further, “expected claimants to use treatments such as contraception or hysterectomy without addressing risks…” even when such treatments might directly counter the needs and preferences of the claimants.
“The hope is that this evidence will help us create a more equitable disability application and review system for those with chronic pain conditions and noncancerous gynecologic conditions such as endometriosis,” said Dr. Cromeens.
With endometriosis, tissue similar to the lining of the uterus grows outside the uterus, affecting other parts of the body such as the ovaries, fallopian tubes and pelvis. It is a painful condition that often is not well understood by physicians and regularly evades standard methods of assessment, such as imaging. It’s not uncommon for it to be misdiagnosed as other conditions, such as IBS (irritable bowel syndrome), or for the symptoms to be taken less seriously than other chronic pain conditions.
Endometriosis is a relatively common chronic condition affecting more than 11% of American women ages 15 to 44, according to the Office on Women’s Health, though this number is estimated to be higher by experts due to misdiagnosis.
The study findings have broad implications for healthcare, policy and legal systems, and for the millions of underserved people who live with this and other chronic pain conditions—conditions that may also be similarly impacted by current application and review methods.
Read the full analysis: “Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis.” Women’s Health Issues, Jacobs Institute of Women’s Health, May–June 2024 issue.
This study was co-authored with the indispensable Kathleen Knafl, PhD, FAAN; Whitney R. Robinson, PhD, MSPH; Erin T. Carey, MD, MSCR; Zakiya Haji-Noor, PhD, MPH; and Suzanne Thoyre, PhD, RN, FAAN.