The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships.
Stijn De Baets, Marieke De Temmerman, Patrick Calders and 5 others
PMID 36188999WHAT IT FOUND
People with hypermobile Ehlers-Danlos syndrome described losing their sense of self as they could no longer do their hobbies or work.
They found it hard to ask for help without feeling guilty, and noted that strangers judged them for using wheelchairs or resting.
Key findings
01Participants reported that their inability to engage in previous activities led to a loss of identity, with one stating they did not know what to do with their time.
02Asking for and accepting help was described as causing feelings of inferiority and guilt, often perceived as more difficult than the physical pain itself.
03Social interactions were negatively impacted by the invisible nature of the condition, leading to judgment from strangers regarding the use of mobility aids.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The study included only one male participant, so the findings may not reflect the experience of men with hEDS/HSD. Only one participant had HSD; the rest had hEDS, so the specific impact of HSD is not well represented. Participants were recruited from a patient association, which may mean they were already more socially engaged or motivated than the general population of people with these conditions. The study is exploratory and qualitative, so it cannot determine how common these experiences are or whether they change with intervention.
Declared interests
The authors declared no commercial or financial relationships that could be construed as a potential conflict of interest.
The easy way to misread this
Do not assume that patients who are quiet or independent are coping well. The study found that many participants felt guilt and inferiority when needing help, and some were pushing past their limits to avoid appearing 'broken' or to maintain their sense of self.