I’m an economist and a community acupuncturist with the world’s sweetest cat and an overly ambitious reading list. I was diagnosed with ankylosing spondylitis seven years ago, but like so many spondyloarthritis (SpA) folks, I had symptoms for more than a decade before that. For years, I’d wake up in the middle of the night with pain so intense I could barely breathe, unable to move without gasping. In retrospect, I had classic AS symptoms, but the various doctors I sought help from seemed baffled and, too often, dismissive. I knew my levels of pain and fatigue weren’t normal, but since it wasn’t very apparent to the people around me, I began to doubt my own experiences and feel ashamed. My friends would say that they, too, had back pain and felt exhausted sometimes. Was I making a mountain out of a molehill? When I finally got diagnosed, I felt a strange mix of relief and fear. I wasn’t just imagining it–this AS thing is HARD!–but it was scary to accept the idea that I’d probably be dealing with it for life. I’ve come a long way in my ability to manage SpA-related physical and emotional difficulties, but I still have pain and physical limitations that can be hard for others to understand. I kept hoping someone would start a support group in Portland, until I thought, maybe that someone could be me.
About the Group: This group is a safe space for people living with SpA and their loved ones to share experiences without judgment and receive support from others who know what it’s like. When we check in or have roundtable discussions, it’s fine to share a little, a lot, or just listen. Some meetings may include guest speakers on topics of interest to the SpA community. If you have any questions, please feel free to contact me at firstname.lastname@example.org.