Some people just don’t “get” chronic illness, and they can be pretty cruel about it — or thoughtless, at the very least. It’s hard when people don’t understand what it’s like for those with ankylosing spondylitis (AS) to live with daily pain and the pressures of financing medication,…
After my diagnosis of ankylosing spondylitis (AS) in 2017, my doctor told me to quit drinking and smoking and to start a decent exercise routine. Then, he basically said, “Go on Humira, and good luck.” I was just a number, in and out of his office. People in Facebook…
I’ve noticed lately that public health crises, such as the new coronavirus pandemic, make many people anxious. This is especially true for the immunocompromised, disabled, and chronically ill. Of course, there’s a difference between health anxiety and health concern. Anxiety is obsessive. It’s irrational and toxic. Concern, on the…
Look, I get it. You can’t blame people for being curious. It’s hard not to be when someone lives with an incurable — and mostly invisible — disease. I’m not hunched over, and I don’t typically have swollen red eyes, so to other people, I look “normal.” In this…
A lot can be said for living intentionally. This is a buzzy phrase that people either seem to scoff at or tune into. I’m aware of its sometimes empty, woo-woo uses, but I believe that it is important — especially when living with a chronic illness. Before ankylosing spondylitis (AS)…
Dear newly diagnosed friend, You are now inducted into the ankylosing spondylitis (AS) society. Welcome. You didn’t ask for this and likely have no idea what its perks (or dues) might be. Nonetheless, you are here and so are we — we’re in it together. You probably had a…
I’ve had gut problems for a long time. We’re talking years. When I was a kid, my mom, who was a nursing assistant, helped me when I had tummy aches. My father even brought me to see her at work at the hospital when I was in so much pain…
When I’m in a flare-up, I sometimes journal about what I feel — especially if I’m feeling vulnerable, weak, sad, or frustrated. I do this because writing is second nature to me (duh!), but also because being aware of my feelings makes it easier for me to manage them. I…
I rarely meet anyone with ankylosing spondylitis (AS), and I almost never meet someone who knows what it is or how to pronounce it. So when I do, it feels extra special. I recently spoke in person with someone who had written a piece about their experience with AS and…
As we begin a new decade and a new year, I’m trying to focus more on ankylosing spondylitis as a strength rather than a limitation. I’ve always been relatively good at finding the silver lining in hard situations, but when times are tough and moments get dark, I sometimes give…
Get regular updates to your inbox.