Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type

Abstract

Purpose The aim of this study was to explore embodiment as a meaning‐making experience in the daily life of Norwegian adults living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type (JHS/EDS‐HT). The work of Drew Leder and his distinction between bodily dis‐ and dys‐appearance contributes to the description and analysis of individuals' bodily experiences of living with this chronic illness. Methods An explorative and qualitative design was applied to in‐depth interviews with seven participants. The theoretical framework was phenomenological, and the method of analysis was thematic, involving descriptive and interpretative approaches. Results Participants' bodily experiences were closely connected to a timeline viewing their illness in the past, the present and from future perspectives. The following central themes emerged from the data: (a) visible to invisible signs of a former body; (b) standing up and falling down of a present body; and (b) future thoughts of an inner and outer body. Conclusions The study found that living with JHS/EDS‐HT revealed complex experiences of having flexible bodies and restricted lives. Our findings also showed a meaning‐making process of embodied experiences that evolved over time, as well as a sliding transition from social to personal dys‐appearance. In the course of time, a bodily disruptions in social interactions comes to the fore, with invisible symptoms such as pain and fatigue. Individual bodily suffering determines the existence of hope or hopelessness regarding recovery from this condition.

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review

“…Pain, fatigue and weakness demand attention and resolution, causing individual suffering. HCPs need to develop an ethical attitude and sensitivity in listening, and acknowledge bodily experiences to understand the nature of this illness An integrated approach in the management may provide a deeper understanding, better clinical decision‐making and improved possibilities for recovery Terry, et al (2015) [ 23 ] MSK/Orthopaedics: recurring joint dislocation Miscellaneous: fatigue, pain (chronic and acute), proprioception Anxiety disorder: heightened anxiety Cognitive disorder: catastrophising Negative affect: modify/restrict behaviours, stigmatised, fraudulent Miscellaneous: fatigue, pain Hobbies/daily activities: modify/restrict behaviours, activity pacing Diverse, fluctuating and debilitating symptoms. Diagnosis is slow, exacerbating symptoms.…”

The diagnostic journey in adults with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders

“…Most studies were conducted in the United Kingdom, with the remainder from Belgium, Norway, Spain, and the United States. Six studies had primary authors from the field of rehabilitation (Bennett et al, 2021; De Baets et al, 2017, 2019; Palmer et al, 2016, 2019; Sætre & Eik, 2019). Other disciplines represented in the studies' authors included genetics (Bovet et al, 2016; De Baets et al, 2017, 2019), psychology (De Baets et al, 2017, 2019; Friedner, 2020; Pezaro et al, 2020; Schmidt et al, 2015; Terry et al, 2015), rheumatology (Schmidt et al, 2015), podiatry (Palomo-Toucedo et al, 2020), nursing (Palomo-Toucedo et al, 2020; Pezaro et al, 2020), community medicine (Terry et al, 2015), neuroscience (Schmidt et al, 2015; Terry et al, 2015), and child health (Terry et al, 2015).…”

“…Also, one study included patients and health care providers (Palmer et al, 2016), and another study used patients and their family members (Friedner, 2020). Data collection methods included individual in-person, telephone, or video conferencing interviews (Bennett et al, 2021; De Baets et al, 2017, 2019; Friedner, 2020; Palmer et al, 2016; Palomo-Toucedo et al, 2020; Pezaro et al, 2020; Schmidt et al, 2015; Sætre & Eik, 2019), synchronous text-message interviews (Pezaro et al, 2020), focus groups (Bovet et al, 2016; Palmer et al, 2016; Terry et al, 2015), and free-text responses to open-ended survey questions (Clark, 2012; Palmer et al, 2019). One study was a case analysis of a single family that used both individual and family group interviews (Friedner, 2020).…”

Gastrointestinal symptoms and nutritional issues in patients with hypermobility disorders: assessment, diagnosis and management

“…A rheumatology opinion to confirm HD diagnosis and severity, informs psychosocial approaches. Psychological overlay with pain, both musculoskeletal and GI, is well described: patients may have embodiment (distress is expressed as physical sensations44) and/or somatosensory amplification (lower pain thresholds, hypervigilance, visceral hypersensitivity45). Identifying and addressing these psychological processes reduces morbidity and iatrogenesis: as with all functional somatic syndromes, depression is common, easily missed and treatable 46.…”