7 Things I’ve Learned from Having Ankylosing Spondylitis

I was diagnosed with AS in 2014, when I was 23 years old, after seeing doctor after doctor trying to figure out what was wrong with me. I remember calling my mother from the subway station, thrilled to finally have an answer. “I don’t know what it is,” I said. “It sounds like a dinosaur.”

Over the next few months, I followed a steep learning curve, trying out different medications, investigating what to eat and how to exercise, and reading countless websites trying to anticipate what this diagnosis would mean for my life. But there are 7 things that those websites didn’t tell me, some of which have taken me nearly 10 years after diagnosis to figure out.

I was lucky. On average, it takes a person with AS 5 to 7 years from when they first begin experiencing symptoms to when they’re finally diagnosed. But even just in my year searching for an answer, I had interactions with doctors that made me question myself. Twelve months of doctors treating you like you’re attention-seeking will do a number on your confidence.

After being diagnosed, those anxieties didn’t go away. What if I’d just tricked the doctor who diagnosed me, and there really was nothing wrong? And even if I did have AS, that wasn’t as bad as some people’s illnesses. Was asking for accommodations using resources that weren’t meant for someone like me? Did I really count as chronically ill or disabled?

The bottom line is there is no chronic disease fairy — or perfect doctor — who will come along to assuage those worries. And there is no one in the world who is going to make your health their first priority. You have to learn to advocate for yourself and to make the decisions about what’s necessary for your body to be able to function the best it can. That means standing up for yourself in relationships, at work, and in doctor’s offices.

Most resources about AS focus on the chronic pain features. While that’s certainly something I struggle with, the aspect that’s disrupted my life the most is the less-mentioned, overwhelming, constant fatigue . It’s hard to explain to people in a world where everyone constantly tells you how tired they are, too, that you’re dealing with an intractable, overwhelming exhaustion that’s outside the realm of what’s normal. People are rarely sympathetic to someone who’s “just tired.”

That being said…

Once you begin to advocate for yourself as a chronically ill person, you figure out pretty quickly who is and isn’t going to be worth your time. Some people will take every canceled plan or declined invitation personally. You’ll find out that those aren’t people to keep in your life a lot faster than an able-bodied person would.

Once you get more familiar with your illness, it can be frustrating to have to explain the basics of living with a disability to new coworkers, romantic partners, or unfamiliar family members. You might get irritated that they don’t understand more quickly and feel yourself disconnecting from them when they make mistakes.

But the truth is, you weren’t born knowing about your illness either, and even if they do happen to be familiar with AS, they might not understand exactly how your case manifests. It’s important, no matter how exhausting it is, to give new people a chance to prove that they can be an ally and an advocate. Nobody starts perfect.

There are, of course, people who don’t need a crash course in your illness before they know how to interact with you: other patients. Online communities make it easy now to find people with AS and related diseases, and there is nothing like the relief of being able to jump into conversations with people who understand exactly what you’re going through.

When I started navigating the world of fertility treatments last year, I realized how much of a head start I had compared to other people my age. I knew how to advocate for myself with a doctor and how to argue with my insurance company about a pre-auth. Ultimately, everyone will face a health struggle in their lifetime if they’re lucky enough to live long enough.

At least with 10 years of AS under my belt, I’m already an expert at being a patient. And giving myself shots? Easy.

Last medically reviewed on April 13, 2023