Columns

Some people just don’t get it. Maybe others try, but the majority don’t. If you don’t live with a chronic or degenerative disease, it can be hard to wrap your mind around an invisible illness. When you’re not actively sick all the time, it’s easy for people to think you’re…

Travel is particularly brutal when I’m in a flare-up. When I’m feeling OK, it’s still hard but more manageable. With a partner whose family lives in Brazil and the U.K., I go to Europe at least once per year. I travel pretty frequently within the States as well. The ability…

I realize that the title of this column is hyperbolic, but it contains an element of truth. I often think about how we get to know our daily pain on a deep, intuitive level. We can guess its patterns and ways of expression. We can understand where it came from…

As a poet myself, it warms my heart to have learned that Simon Armitage, the U.K.’s new poet laureate, has ankylosing spondylitis (AS). I know of few writers who have the disease, and to see someone like Armitage living and creating, despite AS, gives me hope. I won’t…

I am a big fan of ritualized living. I even wrote a book about it, “Light Magic for Dark Times,” which includes a chapter on body and identity, largely inspired by chronic illness. To me, ritual is a wellness habit. When we embrace ritual, we are actually embracing time…

I left a really challenging job situation last year. The job was making me physically sicker and sicker, like the blood in my veins was slowly draining. My ankylosing spondylitis (AS) has never been as horrific as it was during my nearly two years at that job. It wasn’t…

There are many great things about social media. It connects people who would never otherwise meet or talk, creates shared experiences, and can be used as a tool for support and empathy. On social media, the great “we” can be parsed into parts; suddenly the faceless many with ankylosing spondylitis…

When I was officially diagnosed with ankylosing spondylitis (AS) two years ago, I’d been having symptoms for the better part of a decade. The diagnosis came at a time when I finally had health insurance and could book myself in to see a rheumatologist at one of the best…

I was put on biologic medicine to treat ankylosing spondylitis a little over a year ago. I started the biweekly injections and slathered myself in hand sanitizer everywhere I went. Living in New York City, I’m surprised I wasn’t sicker more often! Everyone warned me that biologics were the gateway…

Life can be affirming and beautiful, but it also can be hard, random, and totally unfair. We all know this. And all of that is extra real when living with a chronic disease like ankylosing spondylitis (AS). We may wonder: How does everyone have so much energy all the time…