Video: Communicating with Providers—How to Be Your Own Best Advocate
Amanda Cassil, PhD presenting at the Ehlers Danlos Conference in Dublin, Ireland in August 2023.
What is Ehlers Danlos Syndrome (EDS)?
According to the National Organization for Rare Disorders, “Ehlers-Danlos syndrome (EDS) is a group of related disorders caused by different genetic defects in collagen. Collagen is one of the major structural components of the body” (2021). There are many subtypes of EDS, one of which is hypermobile EDS (hEDS) that affects an estimated 1/10,000 to 1/15,000 individuals. People with hEDS often face challenges with their joints, skeletal system, digestive tract, skin, organs, etc.
Through the incredible research of the Ehlers Danlos Society, doctors and patients are starting to understand more, but this research domain is still relatively young and has a long way to go. As with many chronic, complex illnesses, EDS patients are frequently dismissed, minimized, or sent to therapists with the assumption that the underlying problem is psychological in nature. This can be incredibly damaging for patients physically, mentally, and emotionally.
The Value of Cross-Discipline Collaboration
Unfortunately, most doctors do not have the time or ability to collaborate with their patients’ treatment teams. This leaves the patient responsible for being the messenger and translator between their doctors—a significant feat for individuals not trained in medicine and often managing symptoms that impact cognition. Consulting with other providers is a “non-billable” service, meaning insurance won’t pay for it. So the rare doctors who do consult with other providers are typically either paid another way (e.g., work for a school or research lab), in private practice (like many therapists), or doing this work pro bono.
Working with the chronic illness community reveals a lot about the intersection of mental health and physical health, the biases present in different branches of medical care, and how important trauma-informed therapy is. Individuals with hEDS often hunt for years to find doctors who will entertain the idea that their symptoms may be connected. Working with a therapist should not replace seeking proper diagnoses and treatment plans for physical conditions, but can focus on helping individuals cope with the recurring medical trauma, mindful engagement in treatment plans, and the grief inherent in chronic illness.
A Note for Mental Health Providers
Finally, a reminder for other therapists that physical and mental health is deeply linked. When we are assessing things like depression, anxiety, and more, working together with physical medicine is crucial. For example, when anxiety is a large part of the clinical picture, it’s important to consider underlying health conditions and refer to medical doctors for evaluation. Conditions such as thyroid dysfunction, electrolyte imbalances, neurological disorders, nutrient deficiencies, hypermobile Ehlers Danlos, and more can all look like, or exacerbate, Generalized Anxiety Disorder.
Citation:
National Organization for Rare Disorders (2021, September 27). Ehlers Danlos Syndrome. https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
