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The Invisibility of Ankylosing Spondylitis

By Ali Cornish, as told to Hallie Levine                                      

I was diagnosed with ankylosing spondylitis (AS) in 2016 at the age of 33, but I’d been managing its excruciating pain for years. Yet even at my worst, most people who knew me didn’t realize what was going on. AS isn’t like other forms of arthritis, like osteoarthritis and rheumatoid arthritis, where you can usually see swelling of the joints. With AS, there are often no physical signs. You can’t see a person’s immune cells attacking their body. The damage that occurs -- like the new bone that forms in your spine, or the nerves that are constricted by inflammation -- is on the inside. As a result, you can be in agony and battle other symptoms like fatigue, but still go about living your day-to-day life. That’s one of the reasons it can be such a devastating disease. You suffer silently, and alone.

Putting On a False Front

In 2011, if you’d looked at me, you wouldn’t have suspected anything was wrong. My life was a flurry of activity. I was a high school English teacher in Arlington, MA, who also coached cross-country. I ran with the team daily and then came home at night to grade papers and create lesson plans. But I had begun to experience shooting pains down both legs. I dismissed it, thinking it was due to overactivity, although stretching and over-the-counter painkillers didn’t help.

Eventually, limping became normal for me. I became skilled at hiding it. Sometimes the pain would subside for weeks,but other times it was a daily issue. I learned to live with it. It gradually worsened, and by the time I was diagnosed with AS, I could barely walk. I would take a step and then my leg would buckle underneath me. I couldn’t sit for very long because the pain in my lower back was so severe. I stood during events like my students’ graduation ceremony. My colleagues didn’t understand why I didn’t sit. If I was strong enough to stand, how could I be in so much pain?

My symptoms were always worse at night. I had sciatica, pain that radiated from my lower back down my legs. When I lay down to try to sleep, my back would stiffen so much, it felt like a board. Any movement would cause stabbing pain that left me feeling like I might die. I slept very little, and when I did wake up, I was paralyzed with stiffness. I would roll out of bed like a feeble 90-year-old woman and shuffle to the bathroom. I couldn’t lift my legs to put on underwear or jeans. I couldn’t bend over to put on my shoes. I had to swivel my body in and out of the car.

Yet my students and co-workers never suspected anything. I didn’t want my kids to feel worried and concerned, so I never let on that I was in pain. I became a master at hiding my emotions. My students never asked me why I didn’t sit at my desk. The truth was I didn’t dare. Once I was in the classroom by myself getting ready, and I took one step after getting up from the chair and fell to the floor sobbing in pain. There was no way I was going to let them see that happen.

Dealing With the Diagnosis

When I was finally diagnosed in 2016, I was devastated. The rheumatologist showed me an image of my deteriorating pubic bone and told me that I had ankylosing spondylitis, a disease that could never be cured. I drove

home feeling that my life was over. My boss and a handful of my co-workers knew but didn’t quite get it. There was no visible marker of disability like a walker or a cane, other than a slight limp. They were understanding that I was often out for doctor appointments, but I’d become so good at hiding when I was hurting, they didn’t realize how persistent my pain was.

Thankfully, my husband, Josh, was very supportive. I learned I had AS right before our wedding, and he told me that he’d carry me down the aisle if he had to. He instinctively got that I was suffering more than I let on. I’m lucky, because since then, I’ve met other AS patients whose partners aren’t as supportive or become resentful. He also encouraged me to stay active, which really helped. A lot of people just give up on movement because it’s painful, but it can really help you manage symptoms. At one point, I joined a Facebook support group, but I found it too depressing.

Opening Up About AS

I consider myself one of the lucky ones when it comes to this condition. When I was diagnosed, I was told I would need to take medicine every day for the rest of my life. Thankfully, my disease went into remission during my first pregnancy in 2017, and for the most part has stayed that way, other than some occasional mild sciatica. I’ve been able to keep symptoms under control with an anti-inflammatory diet and managing my stress. I always noticed that my AS flared up during stressful events, such as exam time at school or when I was going through a divorce several years ago.

But that’s another thing that’s often “invisible” when it comes to AS: We can never take periods of pain-free life for granted. I’m so thankful for each day that goes by that I can sleep through the night without pain, pick up my 3-month-old baby, Wesley, or chase my 2-year old toddler, Miles, around the yard. I’m grateful for seemingly simple things like walking through the grocery store and lifting heavy bags from my car to the kitchen. Most people take these things for granted, not realizing that many people during their flares of AS cannot even do basic tasks due to pain. That’s the randomness of AS: One day you can appear totally fine, and the next day your body can be so wracked with agony, you can’t leave your bed. I’m grateful for every pain-free day I can spend with my family. It’s a true gift that you can’t recognize unless you have the disease.