Marching on…

March 2023 is both Autoimmune Disease Awareness and Women’s history month. I’ve decided to combine these two movements and highlight female patient leaders/advocates who have inspired me along my journey with my journey with autoimmune arthritis.

First up is a woman who helped everyone living with chronic illness learn how to explain their disease to others. Christine Miserandino from But you don’t look sick:? Her spoon theory was a simple story to explain how each person living with chronic disease only have so many spoons per day (aka energy) to use. Everything you do during the day, from getting out of bed in the morning to returning to bed at night, costs you a “spoon”. Many patients hit the wall when they have expended too much energy and then they pay for it later. When I came across the spoon theory, I cried and I shared it with everyone I knew. It’s amazing how so many people use the Spoon theory as the building block to explain their life with chronic illness.

Christine’s story resonated with millions of people around the world who now refer to themselves as “spoonies”, but it’s so important to remember who it started with and that is Christine. Thank you for helping so many of us teach others about our chronic lives.

Next is the amazing Amanda John the author of the blog: All flared up. I started to read Amanda’s blog back in 2009 or 2010. Around the same time, I met Tiffany Westrich-Robertson, I also met the other cofounders of IAAM and IFAA, Amanda John and Tami Brown. We were all in the “movement” group on Facebook. I met everyone in person at the Advocates for Arthritis even in DC when members of IFAA were invited to take a tour of NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases). We were sitting in a bar enjoying some adult beverages when it suddenly dawned on me that Amanda was All Flared Up! I had no idea. I had followed her blog and was friendly with her on social media for years. Amanda’s blogs were always thoughtful, humorous, and so relatable. Her witt was always sharp and she was one of the rare bloggers that actually made me laugh. It was her blog that encouraged me to begin advocacy. I’m not sure I ever told her that. Although Amanda no longer blogs, she and I try to meet up at the American College of Rheumatology Advocates for Arthritis event every few years. We were both scheduled to attend in 2022, but I had pneumonia and she had COVID. I hope that 2023 allow me to catch up in person again with my southern sister, Amanda John.