I was diagnosed with Ankylosing Spondylitis about 20 years ago, although I was experiencing symptoms long before that. Among my first and second-degree relatives, 11 of us have either spondyloarthritis, psoriasis, or inflammatory bowel disease, so I’ve had first-hand experiences with the many issues involved with these diseases. In many ways, I could say I grew up with them.
For most of my adult life, I was able to control the symptoms of my disease using over the counter NSAIDs like Ibuprofen and Naproxen. A particularly bad flare in 2012, however, caused more significant damage and systemic changes. I no longer tolerate NSAIDs and administer weekly Humira injections. I am a visual artist, and A.S. has forced me to change my art practice due to physical limitations. I’ve struggled with my disease, and I’ve had to make changes. Standing or sitting at the easel for extended periods is no longer possible. I currently focus on drawing and painting from life in two- to four-hour long sessions.
Like many, I’ve come to understand there is no magic bullet and that treatment must be a four-pronged approach: Exercise, diet, stress relief, and medication. Aside from these practical concerns, however, it’s important to consider the emotional implications of our disease. Tessa Miller wrote in the New York Times about having a chronic illness that “…your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore and a future version that looks different than you’d planned.”
With this group, I hope to help facilitate a non-judgmental environment that provides both support and accurate information. By sharing knowledge, feelings, and experiences, we can learn from each other and take comfort in knowing we are not alone.