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Here’s What It’s Like to Live With an Autoimmune Disease

A writer opens up about her ankylosing spondylitis diagnosis.

A week before my wedding, I was in the ER with a doctor standing over me, flipping my eyelid back. As he looked for the cause of searing pain in my eye and a vampire-like sensitivity to light, I was trying to convince him not to prescribe me eye drops, which would preclude me from wearing mascara on my wedding day. Before he sent me off with some drops, he cautioned that if this eye inflammation came back, it could be the symptom of something more serious. As it turns out, it was.

The irritation in my eye set the wheels in motion for more tests, more doctors and more pieces of a tricky, decade-long puzzle. It ultimately led to the diagnosis of an autoimmune disease called ankylosing spondylitis, which was causing my spine to fuse together. When the verdict finally came, I was, of course, scared, but also relieved: It meant that all of these years of curious pain and fatigue were real.

Prior to my eye incident, I had chalked up my chronic back pain and exhaustion to having overdone it at the gym, sitting at a desk all day, wearing stilettos for too long. But something was wrong. Every possible yoga class and appointment—massage, physiotherapy or chiropractic—would give me a few hours of reprieve, but then such stiffness and deep pain would set in that I couldn’t stretch, rub or vinyasa my way out of. Some days I’d be paralyzed with pain, and then it would mysteriously disappear for months at a time. I walked around feeling jet-lagged, fighting through a fog of exhaustion that didn’t just turn me into a grump; it made me start to disappear.

Some days I’d be paralyzed with pain, and then it would mysteriously disappear for months at a time.

Sadly, many other Canadians feel the same way. “The incidence of autoimmune disease has increased over the years,” explains Dr. Nigil Haroon, an associate professor of rheumatology at the University of Toronto and physician at University Health Network. “Apart from a true increase in incidence, we should consider other factors including better awareness, improved tools for diagnosis, as well as changing diagnostic and classification criteria.”

There are more than 80 types of autoimmune disease, and they can affect anything from your joints (rheumatoid arthritis) to the lining of your intestine (celiac) to your skin (psoriasis). One rationale is the hygiene hypothesis, which posits that we have become so clean that our immune system is lopsided, resulting in allergy and inflammation of our own cells. The umbrella term “autoimmune disease” points to the fact that though the manifestations reach far and wide, each one works in the same way: The immune system goes rogue and attacks the body. In my case, my immune system was enlisting a firing squad in my perfectly good spine and sacroiliac joints. No one knows what prompts a flare-up, explains Haroon, but it could be anything that throws the body’s regular immune system off-kilter: A hangnail, an infection, a virus, stress and even periods of starvation.

Like many people living with an autoimmune condition, I look healthy—so much so that up until writing this story, I never really told anyone that I had a problem. Some autoimmune diseases make their mark on the body immediately; others silently progress. Mine is still invisible, though very much at play in my body. I have never asked someone to give up their seat for me on the streetcar, for example. I’ve dragged myself to the office, even if I’ve barely slept a wink. I’ve quietly ducked out of work events to jam ice in between my shoulder blades and into my hips to ease inflammation. And my silence up to this point wasn’t because I’m surrounded by unsupportive people. I just didn’t want to admit that I’d have to contend with this for the rest of my life.

Like many people living with an autoimmune condition, I look healthy… Some autoimmune diseases make their mark on the body immediately; others silently progress.

Coming to terms with how my body really felt came to a head when I took off with a good friend for a weekend in New York. Every few hours of walking required a half hour of stretching. A day spent doing what we’d normally do completely levelled me. By dinner, I struggled to carry on a conversation. I found myself apologizing—my friend likely didn’t recognize her travel mate. I felt frustrated and defeated.

Nobody understands this identity crisis better than Robyn Baldwin, a marketing professional and fitness and lifestyle blogger with multiple sclerosis (an autoimmune disease that has the highest prevalence in Canada; one hypothesis is that there’s a link to vitamin D deficiency). Both of us are conscious of our caffeine consumption and its potential inflammatory properties, so we meet for a midday juice, where I glean advice about lifestyle tweaks that might help me cope. “I try to get eight hours of sleep a night, minimize my toxin consumption, work out every day and de-stress daily with reading and a lavender Epsom salt bath,” says Baldwin. “You have to understand your body and become your own health advocate.” While I wanted to manage my illness myself, my doctors and I decided to try medication, a biologic, which turns down the dial on my immune system. Though I have to visit a nurse to get my needle every two weeks, it’s a small price to pay.

The upside of this illness is that I’ve become remarkably self-aware. I feel it when I go a few days without yoga. I know what I eat will directly affect how I feel. I don’t need to look at the clock upon rising to see how long I’ve slept: My body tells me with uncanny accuracy. My schedule is governed by work meetings, social plans and now my injection regimen. But I’m learning to get over myself. I think about Baldwin, who refers to MS as her “sidekick,” not a defining part of her life. “We all have our own things, whether it’s depression, a break-up, a medical condition,” she says. “We need to practise empathy. We are all carrying something invisible.”