Ehlers-Danlos and it’s Impacts on Social Participation
Updated: Oct 11, 2022
Recent studies in Belgium by Baets et al. look at patients with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) and their social relationships and social participation.
The study, "The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships" was a small semi-structured interview brought to light and reflecting on the lived meaning of the basic experience (phenomenological hermeneutic) with 11 participants.
Of these interviews, four themes emerged
1) people with hEDS or HSD can no longer do what they want to do and that affects their identity,
2) people with hEDS or HSD have to find a balance in the amount of activities they participate in,
3) having hEDS or HSD influences how to ask for, accept and give help, and
4) Relationships are affected in persons with hEDS or HSD.
Social participation of people with EDS has been a neglected but up-and-coming area of research with researchers looking into biopsychosocial aspects. Positive social support has been noted to be a helpful connection between health and stressful events so should be considered when considering a holistic approach. There has been no research looking into the impact of hEDS/HSD on on identity and interpersonal relationships which is where Le this research has started to fill in this gap.
"Living with Limitations" seems to be a central theme for those living with hEDS and HSD.
Some quotes from the research included.
“I do understand that it is difficult for some people to understand, because… if you are in a wheelchair, people assume that you are in it constantly. And if one moment I get out, I get reactions like why does she need a wheelchair?”
Losing friends and being invited out less was sadly a common issue. Many people found relief in making friends within the hEDS/HSD community where understanding was much easier. Relationships that remained often changed as well as loved ones often can take on caregiving roles they are not prepared for and have their life changed.
People's sense of identity changed as well because of changes in work, hobbies, and roles. Being able to find ways to contribute and participate in society was linked to a greater sense of identity. The loss of these often leads to a loss of identity and feeling like their only identity was "the sick person". Finding ways to have the energy and using assistive devices were talked about as ways to help navigate the pain and fatigue that came from leaving the house.
“I did not want to have an electric wheelchair so quickly, but my shoulders dislocate. You will use that electric wheelchair outdoors, without caring what others think about it, but at least you can… You go from A to B”.
Finding a life balance seemed hard as many of us tend to be "go-getter" and finding that balance between achieving goals and balancing fatigue was often hard. Peer pressure often causing people to push beyond their limits was mentioned and even self-belief is a common issue that we "should" be doing "more".
Not being able to go out as much was noted to have a great impact on social and interpersonal relationships. It would be quite interesting for an additional research question to investigate the role of internet relationships and support groups on social well-being. Do they mitigate the problems seen above that not being able to go out and socialise causes anyway? Does social media actually make things worse?
This is also an important article for those caring for someone with EDS/HSD that the decrease in social engagement can have a negative impact in the areas discussed and maybe on the overall health. So finding ways to improve that by bringing socialisation to the person, and using electronics like video calls regularly for more visual engagement. This would be another area to investigate what alternative options are there.
Baets, S et al (2022) The Impact of
Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships Frontiers in Rehabilitation Sciences. 3, 1-9. doi:10.3389/fresc.2022.832806