May is Ehlers-Danlos Syndrome Awareness Month: My Story as a Clinical Psychotherapist living with EDS Hypermobility

May is Ehlers-Danlos Syndrome Awareness Month: My Story as a Clinical Psychotherapist with EDS Hypermobility

Your friendly neighborhood clinical psychotherapist with EDS is here — and this May, I want to highlight a condition that may be quietly impacting your clients (and maybe even you) without being recognized.

Ehlers-Danlos Syndrome (EDS) refers to a group of 13 inherited connective tissue disorders. Because connective tissue is found throughout the body, these syndromes can affect nearly every system — from joints and skin to the nervous system and gastrointestinal tract.

I was diagnosed with hypermobile EDS (hEDS), the most common subtype, at age 40. Looking back, the signs were there for decades — chronic pain, frequent injuries, fatigue, gastrointestinal issues — but like many people with EDS, I was told for years that I was “just anxious” or “too sensitive.” Research shows the average time to diagnosis is approximately 10.4 years, though for many it’s even longer.

While hEDS has been considered “rare,” emerging data suggest it’s significantly underdiagnosed, with actual prevalence likely closer to 1 in 500 people. Generalized joint hypermobility — which doesn’t meet full EDS diagnostic criteria — may affect up to 10–20% of the population.

As clinical psychotherapists, this matters. hEDS doesn’t just involve hypermobile joints — it’s a multisystem condition that frequently co-occurs with dysautonomia (including POTS), mast cell activation syndrome (MCAS), autoimmune diseases, and gastrointestinal disorders. These comorbidities often contribute to pain, chronic fatigue, poor sleep, and vulnerability to emotion dysregulation.

Research has also found a powerful link between hypermobility and anxiety: individuals with anxiety are 16 times more likely to have joint hypermobility. This is often related to autonomic nervous system dysregulation, which can amplify physiological fight-or-flight responses — sometimes independent of psychological triggers.

In clinical practice, it’s important to be curious when clients present with anxiety, chronic pain, gastrointestinal issues, or unexplained fatigue. Screening for joint hypermobility can help us move beyond cognitive explanations alone and offer truly holistic care. Being able to validate clients’ experiences — particularly in the face of repeated medical invalidation — is critical.

Personally and professionally, I’ve found that Cognitive Behavioral Therapy (CBT) and Dialectical Behavior Therapy (DBT) skills are invaluable. CBT helps challenge distorted beliefs (“I’m failing when I rest,” “I should be able to do more”) and shift toward more self-compassionate, realistic thinking. DBT brings in distress tolerance, emotion regulation, and radical acceptance — tools that help both me and my clients navigate the physical unpredictability of chronic illness with resilience and grace.

It’s also important to remember that therapy alone is often not sufficient for clients with EDS. We need to help them problem-solve around physical activity, medical care, pacing, and self-advocacy — integrating mind and body into the therapeutic process.

This May, I invite you to join me in raising awareness for EDS. Whether you’re a clinician, client, caregiver, or ally, you can help by learning more, asking thoughtful questions, and advocating for those whose struggles are too often overlooked. Together, we can reduce the time to diagnosis, improve care, and create a world where invisible illnesses are met with curiosity, compassion, and respect.