The invisibility of Bechterew’s disease

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Staying active with ankylosing spondylitis
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By Ali Cornish as told to Hallie Levine

I was diagnosed with ankylosing spondylitis (AS) in 2016 at the age of 33, but struggled with its excruciating pain for years. But even at my worst, most people who knew me didn’t know what was going on. AS is not 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 new bone forming in your spine or nerves becoming constricted by inflammation — is on the inside. As a result, you can be in agony and fight other symptoms like fatigue, but still go about your daily life. That’s one of the reasons it can be such a devastating disease. You suffer silently and alone.

Put on a false facade

If you looked at me in 2011, you wouldn’t have guessed that something was wrong. My life has been a busy hustle and bustle. 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 started to feel stabbing pains in 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 adept at hiding it. Sometimes the pain would subside for weeks, but sometimes it was a daily problem. I’ve learned to live with it. It gradually got worse and by the time I was diagnosed with AS I could barely walk. I would take a step and then my leg would buckle under me. I couldn’t sit very long because the pain in my lower back was so bad. I stood at events like my students’ graduation. My colleagues didn’t understand why I wasn’t seated. 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 radiating from my lower back to my legs. When I lay down to sleep, my back would become so stiff it felt like a plank. Every movement caused a searing pain that made me feel like I was dying. I slept very little and when I woke up I was paralyzed with stiffness. I rolled out of bed like a frail 90 year old woman and shuffled to the bathroom. I couldn’t raise my legs to put on underwear or jeans. I couldn’t bend down to put my shoes on. I had to swing my body in and out of the car.

But my students and staff never suspected anything. I didn’t want my kids to worry and worry, so I never let myself be in pain. I became a master at hiding my feelings. My students have never asked me why I’m not at my desk. The truth was I didn’t dare. Once I was alone in the classroom getting ready, and after getting up from the chair, I took a step and fell on the floor, sobbing in pain. There was no way I would let her see that.

handling the diagnosis

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

At home feeling like my life was over. My boss and a handful of my co-workers knew but didn’t quite get it. There were no visible signs of disability such as a walker or cane other than a slight limp. They understood that I was often on my way to doctor’s appointments, but I was so good at hiding when I was in pain that they didn’t realize how persistent my pain was.

Luckily my husband, Josh, was very supportive. I found out I had AS just before we got married and he told me he would carry me down the aisle if I had to. He instinctively understood that I was suffering more than I was letting on. I’m lucky because since then I’ve met other AS patients whose partners aren’t as supportive or get resentful. He also encouraged me to stay active, which really helped. Many people refrain from exercise simply because it’s painful, but it can really help you manage the symptoms. At one point I joined a Facebook support group, but I found it too depressing.

Open via AS

I consider myself one of the lucky ones when it comes to this condition. When I was diagnosed, I was told I would have to take medication every day for the rest of my life. Luckily my illness receded during my first pregnancy in 2017 and for the most part has stayed that way apart from the occasional mild sciatica. I have been able to control the symptoms with an anti-inflammatory diet and stress management. I’ve always found my AS to flare up during stressful events, like exam time at school or going through a divorce a few years ago.

But that’s another thing that’s often “invisible” in AS: we can never take periods of pain-free life for granted. I am so thankful for each day that goes by where I can sleep through the night pain free, pick up my 3 month old baby Wesley or chase my 2 year old toddler Miles around the yard. I’m thankful 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, unaware that many people are unable to perform even basic tasks during their AS flare-ups due to pain. This is the randomness of AS: one day you may seem perfectly fine, and the next day your body may be in so much agony that you cannot get out of bed. I am grateful for every pain-free day that I can spend with my family. It’s a true gift that you don’t realize unless you have the disease.

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