My research is a sociological study of the diagnosis of Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). These diagnostic classifications were introduced in 2017 and describe conditions related to joint hypermobility, commonly referred to as ‘double-jointedness’, alongside symptoms such as joint pain, recurrent injury, and fatigue. They replace the former classifications of Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome Type 3 (EDS 3), between which there were considerable overlap. The implementation of this new diagnostic system has led to much confusion, however, especially a myth that HSD is benign is comparison to hEDS. Further confusion also arises from the relationship between asymptomatic joint hypermobility, HSD and hEDS. This is because the nature of joint hypermobility in itself is hereditary, no specific gene has been identified for hEDS, and there are sometimes individuals with each of the manifestations and highly variable degrees of impairment within the same family.
This prompts questions about the boundaries between these categorisations and more broadly about the boundaries between normal genetic variation and genetic disorder. Alongside recent research suggesting that HSD may be up to ten times more common than previously thought, it seems pertinent for hEDS and HSD to be explored within the framework of a sociology of diagnosis. In doing so, I will address the following three research questions:
- What social factors influenced the formation of HSD & hEDS as diagnostic categories?
- What social factors influence the application of HSD & hEDS as diagnostic categories?
- What are the consequences of the application of HSD & hEDS as diagnostic categories for patients and health professionals?
I will use an ethnographic approach to achieve this; drawing on interviews with patients, health professionals, and individuals from charitable organisations; analysis of diagnostic guidelines and factual information; and analysis of social media posts about the conditions. The research will contribute to a thriving tradition of the study of chronic health conditions and in focussing on hEDS and HSD, will examine a previously unstudied example. This has the potential to challenge existing medical ideas and practices that may cause harm and spearhead the development of improved diagnostic and support practices for those with the conditions, ultimately fostering better patient outcomes.