While I have had migraine since childhood, in my teens and early 20s I had significant symptoms that depleted my quality of life. Doctors settled on fibromyalgia as a diagnosis. I had to learn to manage on my own as doctors didn’t know how to help and I often felt they didn’t believe me. In 2026, during navigating new health conditions, it was uncovered that I actually have multiple sclerosis (MS). Considering my headache journey of migraine, then chronic cluster headache, but especially having bilateral trigeminal neuralgia, it's frustrating this wasn't caught earlier. It was because of a broken ankle and surgical repair, I developed complex regional pain syndrome (CRPS), and am navigating the implant of a spinal cord stimulator, the MS was uncovered.
I've been an advocate in the headache space for a while, however navigating new diagnoses and new challenges (in particular mobility), I have had a new identity crisis. Who am I and how do I best advocate now? What I learned from headache was advocacy helped me find support, community, and education about my disease. Some days advocacy might look amazing, other days I might wear an awareness t-shirt to an appointment or login to a meeting from my bed. Every conversation matters.