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  • Writer's pictureAverie McCauley, LCSW-BACS

Reflection on Becoming a Zebra: EDS Diagnosis Anniversary

Do you see me up there?! Not visible is the kinesiology tape and braces that often support me. During two weeks in the Pacific Northwest, I hiked daily— reaching 12 miles on one day! This is usually outside the limit of what my body can do without consequence. On the five-year anniversary of my EDS diagnosis, I celebrate this win and continuously work to accept where my body is each day.

In 2018, I was on a yearlong quest of investigating a mysterious GI issue that followed a car accident. After meeting a naturopathic gastroenterologist at a medical conference in New Orleans, I traveled to Oregon for an appointment, during which hEDS was diagnosed. That was the first time I heard the name Ehlers-Danlos, and it was only mentioned as a side note.

Eventually, the GI issue became less debilitating, and I learned to manage symptoms through trial and error. When bandwidth became available, I researched EDS and realized that it explained the GI issue and connected ALL of the puzzle pieces collected over the course of my life. Diagnosis and education are essential in navigating this complicated, complex multi-systemic condition.

Coincidentally, five years after receiving a diagnosis in Oregon, I was there again this month. This time, I was able to see my favorite integrative and functional medicine doctor who relocated from New Orleans. Among the countless providers I have seen over the years, before and after diagnosis, the handful who stand out share the same qualities that I strive to embody—presence, compassion, and curiosity.

Healing starts with creating safety, especially for those who have experienced trauma. My personal healthcare team was painstakingly pieced together over years, and I am grateful for each member. A meaningful outcome of my diagnosis is that now I also get to support people with EDS, to advocate, and spread awareness.

My lived experience with hEDS and related conditions has enabled me to recognize Zebras in my practice and personal life—guiding them through the process of diagnosis, education, and treatment. Passing on what I have learned as a person with EDS and sharing my skills as a psychotherapist are where passion and purpose merge.

Learn more about EDS at The Ehlers-Danlos Society.


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