Olivia’s Story

hEDs, dysautonomia, & mast cell activation syndrome

Hi! My name is Olivia, and this is my ongoing story of living with chronic illness.

Growing up, I was a dancer who loved to sing. As I got older, though, I began developing habits that eventually led to my diagnosis of anorexia in 2019. From that point on, life became a constant fight. Although my mental health journey is far from over, I’ve learned how to manage it and regain a sense of stability.

Around 2022, I started experiencing severe neck pain. At first, I dismissed it, assuming it came from years of playing volleyball, dance, and basketball in high school. But by 2023, the pain became unbearable. I found myself in the ER, unable to move my neck, with a pounding headache, yet I was sent home with only pain medication. This became a repeating cycle for the next three years and just got worse every time.

Fast forward to July 17th, 2025, everything changed. I went from boxing, lifting, and running miles a day to barely being able to stand. That night, I began shaking, sweating, and my jaw and neck locked up completely. At a new hospital, I finally received an MRI. The doctors noticed abnormalities but didn’t think they were immediately serious. They prescribed more medication, but it barely touched the pain.

Every day since has been a battle. I experience constant pain, limited movement in my neck, fainting spells, low blood sugar, nausea, vomiting, locked joints, and dislocations. After seeing a spine specialist, a physical therapist, and a specialist in the city, I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), chronic pain, dysautonomia, and mast cell activation syndrome (MCAS). I remember crying when I got the diagnosis…someone finally believed me.

Because I was dismissed for so long, my neck tissue is now damaged and inflamed. The nerves from C1–C4 are being compressed, I have disc degeneration, and only about 10 degrees of neck movement. The vertigo is so severe that standing or walking for long periods is almost impossible. Somewhere along the way, I also developed hypoglycemia and now wear a continuous glucose monitor. We are still in the process of ruling out POTS and other potential complications.

There are days when I feel completely trapped in my own body, unable to move, speak, or even recognize myself. But I hold on to my goals. I’m a pre-med student, an intern, and I work hard every day to build the life I want. I’m surrounded by incredible friends and a family who have supported me through every step of this journey.

This is just a condensed version of my story…one filled with fear, uncertainty, grief, and resilience. I’ve learned that eating is a privilege, walking is a privilege, and living without pain is a privilege.

Be kind to yourself,to your body, to your mind, and to the life you have. You only get one (even if it’s a difficult one sometimes).