For a long time, I wasn’t sure if I was ready to write about all three of my diagnoses—especially the two that have surfaced most recently. The emotional turmoil that followed made it difficult to process, let alone put into words. But now, with some distance and reflection, I’m finally able to share my journey toward understanding and living with my diagnostic trifecta: Autism Spectrum Disorder (ASD), hypermobile Ehlers-Danlos Syndrome (hEDS), and Polycystic Ovary Syndrome (PCOS).
Autism Spectrum Disorder: A Journey of Self-Discovery
My first diagnosis, Autism Spectrum Disorder, came in my early twenties. I’ve written extensively about what it was like to be diagnosed as an adult, and how the process brought both relief and a sense of validation. Understanding myself through the lens of autism has helped me reframe my life experiences, relationships, and even my professional path.
hEDS: When the Body Speaks
The second diagnosis—hEDS—arrived in an unexpected way. It started during what was supposed to be a routine pelvic floor exercise. As I attempted a deep squat, my physical therapist noticed my discomfort and asked, “Have you ever injured that knee?” Suddenly, memories of countless partial patellar dislocations came flooding back. After that one squat, my knee pain escalated, forcing me to stop all treadmill and elliptical activity.
A visit to my orthopedist confirmed what I never expected: I met the clinical criteria for hypermobile Ehlers-Danlos Syndrome. Receiving this diagnosis felt like the ground was shifting beneath me. So many of my lifelong experiences—joint pain, temperature swings, odd symptoms—finally made sense, yet it was sobering to realize that these challenges weren’t going to magically disappear. The grief that followed was heavy; managing two chronic conditions and a disability was now an undeniable part of my daily existence.
Navigating care for hEDS proved overwhelming, even with my healthcare background. No single doctor could address all my symptoms. I bounced from specialist to specialist, sometimes needing to correct referrals myself. Even routine appointments, like one with a cardiologist or an allergy and asthma specialist, became complicated. The uncertainty was exhausting, and I found myself hoping that nothing unexpected would show up on upcoming tests.
PCOS: A New Layer of Complexity
Learning to take care of myself—supplements, vitamins, minerals—became a full-time job. Then came the next challenge: investigating my hormone levels for PCOS. Blood work at my OBGYN meant four vials drawn for a full hormonal panel. I received the results alone in a hotel room outside Atlanta, en route to visit friends in North Carolina. As I stared at the screen, I saw that my AMH level was elevated—exactly what my provider said would confirm PCOS, even with my current medications.
About a week later, I got the call: I now met the Rotterdam criteria for a PCOS diagnosis. Unlike hEDS, which brought mostly anger and grief, this diagnosis ushered in anxiety. It felt like peering down a tunnel into the unknown—yet another layer of complexity to navigate.
Moving Forward
Living with these diagnoses has changed how I see myself and the world around me. Instead of turning inward, I find myself looking outward—connecting with others, sharing resources, and speaking up about the realities of disability and chronic illness. I know firsthand how isolating and confusing this process can be, and I want to help build a community where people feel less alone and more empowered. Advocacy isn’t just something I do for myself anymore; it’s become a responsibility I carry for all of us navigating these complex systems. The work is ongoing, and so is my commitment.
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