Anna Williams (She/Her)

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. Fast forward to 2012, I developed a new type of headache but again was blown off. However in 2017, I developed dental and sinus pain that became severe. By late that year, my pain was off the charts and I decided to switch doctors. I was finally diagnosed with migraine, trigeminal neuralgia and cluster headache. While I thought I’d maxed out my headache diseases, I ended up adding one more in 2020 called SUNCT. As a single parent, several things had to happen - learning about my diseases and finding treatments that worked. I’ve also learned I need to manage my mental health along with my physical health as managing diseases with severe chronic pain takes a toll.

When I began having to set limits of life because of my health I spiraled into depression. At some point I learned these were losses I needed to grieve. However, I felt an identity crisis of, “Who am I?” During my seeking to understand my diseases and treatments I found online communities. In these communities I found not only information, but others like me. I began to have opportunities to write and share my story. I began to feel I had purpose again and also empowered. I have a voice now. Advocating takes on many different forms - I can write, speak, interview or have meetings with my representatives. It can be as simple as wearing a t-shirt or carrying a bag that brings awareness. Every conversation matters!