As women with ‘invisible illnesses’ struggle to be believed, a report on chronic pain could help

Medical professionals say a 2021 report supported by Health Canada could have a major impact on how the medical system can better understand chronic pain and the best ways to diagnose it — something that has been considered a major weakness in health care up to this point.  

But with its release during the height of COVID-19 pandemic, the report flew under the radar, and some doctors and advocates are hoping that can chanage.

There is a wide range of chronic illnesses that are not always visible, including autoimmune diseases such as lupus and endometriosis, and chronic pain and fatigue conditions such as fibromyalgia and myalgic encephalomyelitis, commonly called chronic fatigue syndrome or ME/CFS.

All of these invisible illnesses have often been underdiagnosed, and doctors said women in particular struggle with not being believed by others. Plus, invisible chronic pain and mental health struggles often go hand in hand.

That was the case for Shae-Lynn Bakaluk of Moose Jaw, who has endometriosis, but had to wait over a decade for the diagnosis.

Since she first got her period at age 10, Bakaluk suffered from pain she described as feeling like “razors.”

“Like barbed wire wrapped around every organ down there … my uterus. And it hurt so bad. Like every movement, it just feels like something's pulling,” she said, adding she would spend up to five days crying from the pain. 

Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside of the uterus. The tissue can be found on organs such as the ovaries, fallopian tubes and bowels.

It kicks into full gear with hormonal changes during the menstrual cycle, causing pain, inflammation and even more scar tissue to form.

Feeling like this at such a young age was scary and confusing for Bakaluk, who would have trouble going to school or even getting out of bed. But she said most people around her didn’t take her claims of debilitating pain seriously.

“When I would try and run in gym class, if I was on my period, I would, like, fall over in pain. And then the teachers would be like, ‘Oh, you're just making things up. You just don't want to be here.”

Bakaluk said over the years, she had approximately 50 doctor appointments, ultrasounds or hospital visits. One doctor after another would tell the young girl she simply didn’t have a high enough pain tolerance and that nothing was wrong medically.

“After a while, I did start to feel like they were right, that maybe I wasn't strong enough. Their words really affected me,” she said.

“They're specialists in it. They went through years of school and I'm just a little girl.”