05/12/2025
In this post: a reading list, research, and a friendly reminder :)
As we continue to observe EDS/HSD Awareness Month, let's talk about our joy, and gain some resources to help keep us in that space!
With all the complexities of these spectrums we live amongst, it can be detrimental for some to continue putting our vulnerabilities out there, looking for understanding, to no avail.
Yet, each of us deserves to be heard, believed, and cared-for.
EDS/HSD are often full-body conditions, extending across multiple somatic (body) systems. That means that comorbidities, conditions or symptoms that happen frequently in tandem, appear in abundance. These can be cognitive (Neurodivergence), physical (POTS, MCAS), or social, and often cause more stress to the individual than any diagnosis alone. These things are complex, unique, and often debilitating, BUT...
When societal systems of medicine continually fail us, disregard us, or exacerbate matters because they choose not to believe in our testimonials, we CAN take the power into our own hands, again. Whether through conducting research ourselves, to applying it in our own experiences, to seeking out community that actually holds us in humane regard, Zebras are powerful creatures.
Below is a reading list compiled by Ehlers-Danlos Australia, a supportive social group spread across the continent. It includes books on EDS and Hypermobility Disorders for adults, books on the comorbidities of these spectrums, and even children's literature, to help reduce stigma, and foster understanding/compassion in our little ones. Even across the world, this community is united by our shared experiences; so with gratitude and curiosity, engage yourself! Who knows what may be uncovered...
https://www.ehlersdanlosaus.com/eds-books?fbclid=IwY2xjawKO3e1leHRuA2FlbQIxMABicmlkETFqWnBRd016R3M0ZHN5aEVjAR4xTIqvNJmFiXGf1Z3PURCNu-rlKz7IVq5_VGOVRFRW0w7PxX1SiZJo7JmdWQ_aem_xz5Y_cPxtaF6FQEpjhDDig
For any interested in the overlap between Autism, ADHD, and EDS, this is only one of many research papers investigating this HUGE population. A vast number of Zebras are also Autistic, but what does that mean for how we live our lives? What does that do to impact the support we ask of our communities? What can understandings of both mind and body--as interconnected systems--do to affect the grace we give to ourselves, and our resulting experience of chronic pain/illness?
Evidently, quite a lot.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7711487/?fbclid=IwY2xjawKO20FleHRuA2FlbQIxMABicmlkETFqWnBRd016R3M0ZHN5aEVjAR5WcxtV0T_Cr7DTwsDAgc0_wVrypzCENDkY8LrgmNhq0hpyDLquZAEVidjZ_Q_aem_-49g4MTdGA6SqJHyhwKmng -jpm-10-00260
Give yourself strength: you have done difficult things.
Ask for help today, and allow yourself to receive it!
Find one thing that brings you joy, or helps you to feel self-empowered, and know that inhabiting that joy is Enough.
Happy EDS Awareness Month, everyone!