Living with EDS often comes with navigating an ongoing cycle of injuries, fatigue, symptom flares, medical appointments, unexpected setbacks, and uncertainty about what your body will do next. For many people, EDS-related stressors are cumulative, where each new experience adds to an already heavy emotional burden. Over time, this constant state of stress and adaptation […]
“What if it causes anaphylaxis?” “What if it makes me sick?” “What if it doesn’t work?” “Once I take it I can’t undo it.” For most people, starting a new prescription is routine – pick it up, get generic instructions from the pharmacist, take it, then report back to your doctor in a few […]
Many timesI have been called resilient. A title inflicted on melike a brilliant,gleaming badge of honor. But it was one that I never asked for.Worn without choiceor the ability to claima different perspective,a different name. I give myself a new description,a title that encompassesthe pain and infliction. I am persistent. Resilience is to bendand not […]
We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]
A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]
Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles […]
Content warning: This article discusses difficult encounters and experiences with medical clinicians that some readers may find upsetting or triggering. Please take care of yourself as you see fit. I did not receive an hEDS [hypermobile Ehlers-Danlos syndrome] diagnosis until I was 29 years old, and until 2023, I did not feel one ounce […]
Content warning: This article discusses medical gaslighting and real-life examples of clinician-associated trauma. Please take care of yourself as you see fit. As previously reported, clinician-associated trauma (CAT) is a new term used to describe the trauma created by repeated, negative clinical interactions. It was coined as a result of the study reported in “Clinician-associated […]
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In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”