By Ali Cornish, as told by Haley Levine
I was diagnosed with ankylosing spondylitis (AS) in 2016 when I was 33, but I’ve been dealing with its excruciating pain for years. However, even at my worst, most people who knew me didn’t realize what was going on. AS is not similar to other forms of arthritis, such as osteoarthritis and rheumatoid arthritis, in which you can usually see joint swelling. With AS, there are often no physical signs. You can’t see a person’s immune cells attacking their body. The damage that occurs — such as new bone forming in your spine, or nerves constricting due to inflammation — is on the inside. As a result, you could be in agony and fight other symptoms like fatigue, but still be able to live your daily life. This is one of the reasons it can be a devastating disease. You suffer silently and alone.
False forehead mode
In 2011, if you looked at me, you wouldn’t suspect anything was wrong. My life has been a flurry of activity. I was a high school English teacher in Arlington, Massachusetts, and I also did cross-country training. I ran with the team daily and then came home at night to correct papers and make lesson plans. But I started to have shooting pains in my leg. She turned it down, thinking it was overactive, even though the over-the-counter pain relievers didn’t help.
Eventually, lameness became normal for me. I got really good at hiding it. Sometimes the pain subsided for weeks, but other times it was a daily problem. I have learned to live with it. The condition gradually worsened, and by the time I was diagnosed with AS, I could barely walk. I would take a step and then bend my legs under me. I couldn’t sit for long because the pain in my lower back was so severe. I stood during events like my student graduation party. My colleagues didn’t understand why I wasn’t sitting down. If I was strong enough to endure, how would I be in so much pain?
My symptoms have always been worse at night. I developed sciatica, a pain that spreads from my lower back down my legs. When I lay down trying to sleep, my back was very stiff, and I felt like a wave. Any movement that would cause a stabbing pain made me feel like I might die. I didn’t sleep much, and when I woke up I was paralyzed by stiffness. I would roll out of bed like a frail 90-year-old woman and go to the bathroom. I couldn’t lift my legs to wear underwear or jeans. I couldn’t bend over to put my shoes on. I had to rotate my body in and out of the car.
However, my students and colleagues did not suspect anything. I didn’t want my kids to feel anxious and anxious, so I never quit because I was in pain. I became a master at hiding my feelings. My students never asked me why I wasn’t sitting at my desk. The truth is, I didn’t dare. As soon as I was in class alone I got up, took one step after getting up from the chair and fell to the floor crying in pain. There was no way I would let them see that happen.
Dealing with the diagnosis
When I was finally diagnosed in 2016, I was shocked. My rheumatologist showed me a picture of my deteriorating pubic bone and told me I had ankylosing spondylitis, a disease that can never be cured. I had to
I feel at home that my life is over. My boss and a bunch of my co-workers knew but didn’t quite understand it. There was no obvious sign of a disability such as a pedestrian or cane, other than a slight lameness. They were aware that I was often on doctor’s appointments, but had become really good at hiding when I was in pain, and they didn’t realize how persistent the pain was.
Fortunately, my husband Josh has been very supportive. I knew I had AS just before our wedding, and he told me he’d carry me down the aisle if he had to. He instinctively realized that I was suffering more than I allowed. I am fortunate, because since then, I have met other AS patients whose partners are not supportive or resentful. It also encouraged me to stay active, which really helped me. A lot of people give up movement because it’s painful, but it can really help you manage symptoms. At one point, I joined a support group on Facebook, but I found it very frustrating.
Opening up about AS
I consider myself one of the lucky ones when it comes to this case. When I was diagnosed, I was told I would need to take medication every day for the rest of my life. Fortunately, my illness started to recover during my first pregnancy in 2017, and has mostly remained that way, except for some occasional mild sciatica. I have been able to get my symptoms under control by following an anti-inflammatory diet and controlling my stress. I’ve always noticed AS flare up during stressful events, like exam time at school or when I was going through a divorce several years ago.
But this is another thing that is often “invisible” when it comes to AS: We can never take periods of pain-free life for granted. I am so grateful for each passing day that I can sleep through the night without pain, take my 3-month-old, Wesley, or chase my 2-year-old, Miles, around the yard. I’m grateful for seemingly simple things like walking into the grocery store and carrying heavy bags from my car to the kitchen. Most people take these things for granted, not realizing that many people during episodes of ankylosing spondylitis can’t even perform basic tasks because of the pain. THIS IS RANDOM AS: One day you can look perfectly fine, the next your body can be so tormented, you can’t even leave your bed. I am grateful for every pain-free day I can spend with my family. It is a real gift that you can only recognize if you have the disease.