Exposing arthritis in the workplace

Les MacLeod at their workplace

Timing, coordination and facilitation are Les MacLeod’s priorities while working as a resource specialist in television. Their job is to ensure live shows flow seamlessly, so arthritis, a disease they have lived with for over 30 years, is often far from their mind at work. They never expected to discuss the disease with a colleague, let alone discover they are working with one who also lives with it.

That’s precisely what happened, however, as Les and a director they’ve known for 10 years were chatting with Trish Barbato, President and CEO of Arthritis Society Canada, for an Arthritis Awareness Month segment. 

“Trish mentioned ankylosing spondylitis [AS], which is the form of arthritis I live with. It’s not something I hear about in the world every day,” Les says. “I was eager to say, ‘Hey, I have AS!’ But before I could, the director jumped in and said, ‘I have arthritis.’ What are the chances?”

Arthritis: the colleague you don’t hear about

Those chances are one in five. That’s how many people in Canada live with arthritis, a chronic, incurable disease. Given the prevalence, it’s almost a guarantee that most people have coworkers living with arthritis. It generally goes unspoken, though, which Les ties to shame.

“People might talk about being immunocompromised, which I am because of the medication I’m on, but they don’t say why. I think with arthritis it’s because there’s a stigma,” Les says. “If they do mention arthritis, it’s only if they have a physical manifestation in their hands, or damage in some other way. It’s as if that’s what makes it acceptable.”

Les and the director who worked on the segment with Trish have been colleagues for a decade. Never before was their shared disease discussed.

“I often feel like the only one [living with arthritis at work], so it was wild to learn that I’d been working with someone on a show for years and they were going through the same thing. It makes you wonder about the rest of your colleagues,” Les says. “Trish’s mind was blown.”

“I couldn’t believe it – these two colleagues discovered this similarity, and only because I was talking about arthritis on their show,” Trish says. “It highlights how under-represented arthritis is, including in the workplace, and how much work is needed to raise its profile so more people feel comfortable sharing their diagnosis.”

When Les was a freelancer, which they were for much of their career, they were careful not to disclose their diagnosis. 

“People get spooked. We are hush-hush about it because people make judgments. They might not want to work with you – they think you’ll get tired,” Les says. 

A familiar – and formidable – foe 

Les’ journey with arthritis began as a 20-year-old when they developed pain in their heels that spread to their back and sacroiliac joints, which link the pelvis and lower spine. Les’ father, who also lives with AS and was diagnosed in his twenties, suggested they see a rheumatologist. That’s when a diagnosis was delivered.

Although Les admits it was a relief to put a name to their pain, the diagnosis was difficult to process. 

“All my life, I’ve seen what AS has done to my dad – the fusion, how it impacted his mobility,” they say. “I don’t want to say it was a death sentence, but my life changed at age 20.”

It was drug after drug for Les, where one would work, but then suddenly stop. As they endured this “rollercoaster,” they experienced agony and bad bouts of uveitis, an inflammation inside the eye that can trigger pain, redness and vision loss, and can be caused by autoimmune diseases like AS. This led to cataract surgery in one eye. 

“Since I got my eye under control and started taking a biologic about 10 years ago, I’ve been in pretty good shape. I can’t stay in the same position for long, traveling in the car can be difficult and I have a lot more stiffness than other people, but I’m pretty good,” says Les. “I can remember doing yoga and crying because I couldn’t get up from the floor. I can remember walking to the washroom after waking up and my feet would hurt so bad. I don’t get that now.”

Considering how much their life has improved thanks to biologics, Les is grateful. 

“When I see my rheumatologist once a year and he asks how long my morning stiffness lasts, I say five seconds. In the past, that would have been 30 minutes,” they say. 

With a handle on their own disease, Les now focuses on helping their partner accept her recent arthritis diagnosis. They’re also determined to train a spotlight on the disease – whether in the workplace or otherwise. 

“Now that I have the luxury of full-time employment, I’m totally comfortable talking about it in case young kids I work with get diagnosed,” Les says. “The experience with my director and Trish, funny as it was, really hammered home how much awareness is needed around arthritis. I want to demystify. I want people to know, and I'm happy to support Arthritis Society Canada in their efforts.”