11/10/2025
For many living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), mental health is not a separate chapter, it’s woven into every part of the story.
Too often, symptoms start young and are dismissed, misinterpreted, or explained away. People spend years, sometimes decades, searching for answers, navigating a system that overlooks or minimizes their pain.
That long road to recognition is not just frustrating. It’s traumatic. Many in our community carry deep scars from being told it’s “all in their head,” from enduring unnecessary treatments, or from being gaslit when their bodies were trying to speak.
This repeated dismissal doesn’t fade once a diagnosis finally arrives. It leaves lasting impacts: medical PTSD, severe anxiety, deep mistrust of healthcare, and for too many, thoughts of self-harm or su***de. These are not rare exceptions, they are patterns we hear again and again, and they speak to the urgent need for early recognition, better education of healthcare professionals, and a healthcare system that listens and believes from the very first appointment.
On , we must face this truth head-on: the mental toll of living with an undiagnosed or misunderstood chronic and rare conditions can be as life-altering as the physical symptoms themselves. Early, accurate diagnosis and trauma-informed care are not optional, they are lifesaving.
No one should have to fight to be believed. People with and deserve compassionate, trauma-informed care that includes as a vital part of every treatment plan. Integrating emotional and psychological support into multidisciplinary care isn’t a luxury; it’s a lifeline that can change lives.