One Yom Kippur not so long ago, I was in too much pain to stand at Ne’ilah, the closing service. I was sitting near the back of the synagogue sanctuary, holding back tears. Looking around, it seemed that even the most frail of the elderly congregants — people who relied heavily on mobility devices like canes and walkers — were on their feet for those final fervent moments of prayer. But there I was, a woman in her twenties, outwardly healthy-looking, remaining in my chair. Would my community think I was lazy? Entitled? Irreverent?
I didn’t know it yet, but the pain that kept me in my seat that year was a symptom of the chronic illness I would be diagnosed with a few years later called ankylosing spondylitis. Ankylosing spondylitis, part of a family of diseases known as seronegative spondyloarthritis, or axial spondyloarthritis, is a form of inflammatory arthritis that primarily affects the spine and sacroiliac joints — the place where the base of the spine meets the pelvis — but can also involve other joints, like fingers and toes, and even the jaw. It’s a systemic condition, and so people with A.S. often experience other disabling symptoms like debilitating fatigue and cognitive dysfunction, also known as brain fog. Unlike rheumatoid arthritis, there is no diagnostic blood test, so many people with A.S. report delays in diagnosis of five to eight years from when they experienced their first symptoms.