Intersecting Stripes: A QueerCrip Approach to Understanding Gender Disparities in hEDS Diagnoses

The present study concerns the topic of gender disparities in the diagnosis of hypermobile Ehlers-Danlos Syndrome, also known as hypermobile EDS or hEDS for short. Hypermobile EDS is one of 13 known types of EDS, which is a class of connective tissue disorders. It is a progressive disorder that manifests as frequent joint dislocations and subluxations, stretchy skin, frequent bruising, atrophic scarring, and a whole host of other symptoms and comorbid conditions. Conservative estimates indicate that approximately 70% of hEDS diagnoses are women (Demmler et al. 2019). This is puzzling to medical researchers because the genes for EDS are not sex-linked, meaning that the ratio of women to men that are diagnosed should be roughly the same. Using a grounded theory approach, I constructed categories of mid-to-late-stage diagnoses based the average age of diagnosis for both men and women, with the intention of understanding what factors may delay one’s diagnosis or preclude it entirely (Charmaz 2014; Demmler et al. 2019). By intentionally oversampling the transgender and non-binary population, I was better able to ascertain the effects of gender versus sex on participants’ experiences. Through intensive, online interviews with 20 participants, this study reveals five main themes that may explain the differential rates of diagnosis: hormonal sex differences, abuse and neglect, hegemonic masculinity, neoliberal values, and careers in healthcare.