When Surveillance Fails: Reproductive Boundary Expansion and Diagnostic Delay in Hypermobile Ehlers-Danlos Syndrome

• In Event: Medical Sociology Section Roundtables
  In Refereed Roundtable (90 minute): Table 6. Reproductive and Women's Health

Abstract

Pregnancy is among the most intensively monitored periods in contemporary medicine. Frequent prenatal visits, diagnostic imaging, laboratory testing, and specialist referrals suggest that obstetric care should function as a critical window for recognizing underlying chronic illness. Heightened surveillance ostensibly increases opportunities for diagnostic clarity, yet intensified monitoring does not necessarily produce recognition. This study demonstrates that pregnancy can amplify symptoms while simultaneously delaying diagnosis. Drawing on in-depth interviews with individuals diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), I show that obstetric complications are often absorbed into the interpretive category of “normal pregnancy” rather than treated as indicators of systemic pathology. I argue that this pattern reflects a process of reproductive boundary expansion—a form of boundary work in which the category of normal reproduction widens to encompass symptoms that might otherwise prompt diagnostic investigation. Through reproductive boundary expansion, clinicians recalibrate thresholds of abnormality in obstetric contexts, rendering surveillance compatible with nonrecognition. Diagnostic delay, therefore, is not simply a consequence of insufficient access to care or limited institutional contact; it is produced through classification practices that reorganize the boundary between normal reproduction and chronic illness.

Author

• Rebecca Lynn Shields, University of Arizona