As women suffering from ‘invisible illnesses’ find it hard to believe, a report on chronic pain may help
Medical professionals say that a 2021 report Supported by Health Canada could have a big impact on how the medical system can better understand chronic pain and what are 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 the COVID-19 pandemic, the report flew under the radar, and some doctors and advocates are hoping that may change.
There are a wide range of chronic diseases that are not always visible, including autoimmune diseases like lupus and endometriosis and chronic pain and fatigue conditions like fibromyalgia and myalgic encephalomyelitis, commonly referred to as chronic fatigue syndrome or ME/CFS.
All of these invisible illnesses are often undiagnosed, and doctors say women especially struggle with not being believed by others. Additionally, invisible chronic pain and mental health struggles often go hand in hand.
That was the case for Shay-Lynn Bakaluk of Moose Jaw, who has endometriosis but had to wait more than a decade for a diagnosis.
Since Bakaluk first menstruated at age 10, she has suffered pain that she described as feeling like a “razor.”
“Like every organ under my uterus has been wrapped with barbed wire. And it hurts so badly. Like every movement, it feels like something is pulling,” she said, adding that she spent up to five days crying in pain.
Endometriosis is a chronic condition where tissue similar to the lining of the uterus begins to grow outside the uterus. The tissue can be found on organs such as the ovaries, fallopian tubes, and intestines.
This begins in full swing with hormonal changes during the menstrual cycle, causing pain, swelling and even more scar tissue to form.
Feeling like this at such a young age was scary and confusing for Bakaluk, who had trouble going to school or even getting out of bed. But he said most people around him did not take his claims of debilitating pain seriously.
“When I tried to run in gym class, if I was on my period, I would collapse in pain. And then the teacher would say, ‘Oh, you’re just making things up. You don’t even want to be here.’
Bakaluk said that over the years, she has visited the doctor, had ultrasounds or visited the hospital about 50 times. Doctor after doctor told the young girl that she did not have enough pain tolerance and that there was nothing medically wrong.
“After a while, I started to feel like they were right, maybe I wasn’t strong enough. His words really touched me,” she said.
“They’re experts at it. They went to school for years and I’m just a little girl.”
Bakaluk struggled with loneliness, isolation, anxiety, depression, and even suicidal thoughts.
“It never happened because I didn’t want to be on this earth anymore. It was too much pain.”
The more pain she was in, the more Bakaluk needed pain medication. But because she wasn’t believed, health care professionals told her she was just out for drugs. Bakaluk said this reaction didn’t stop with her final diagnosis.
“I’d tell them I have endometriosis. I’d be screaming in the hospital and they’d say, ‘Oh, you’re just a drug seeker. You’re just an attention seeker. You love pain meds.’
Diagnosed after 11 years
Dr. Soni Singh of the Canadian Society of Obstetricians and Gynecologists said if a woman is struggling with pain for a long time, with diagnosis delayed and repeatedly rejected, it’s a shared responsibility between providers and families.
“I’ve heard that a lot… ‘People told me I was crazy,'” Singh said.
Canadian chronic pain physicians and advocates say women are less likely to be believed when they do not show pain symptoms. Women of color report that they face even more discrimination and barriers to health care assistance.
Gender bias in medicine causes invisible diseases to disproportionately affect women. Singh said it is the job of health care providers to tell these women what has happened to them because Canada has no system to support them.
“So depression, anxiety and other mental health problems are related because if you’re suffering from pain for so long and you don’t get help, how can you possibly cope?” Singh said.
At age 21, doctors found a cyst in Bakaluk’s ovary. It turned out to be ovarian fibrothecoma – a rare, benign tumor of the ovary.
Bakaluk underwent surgery to remove the tumor. Then endometriosis lesions were discovered in her body. When her doctor told her, she felt greatly relieved – she finally accepted that she was “not crazy.”
Bakaluk said, “After all these years, just to have a little bit of faith… I started screaming when they told me. I finally had a reason why I was in so much pain.”
fibromyalgia fog
In 2020, Amanda Gibson began noticing changes in her body that frightened her.
“I would get electric shocks down my arms. My skin would hurt, I would get brain fog, I would get headaches. I would have really weird sensations all over my body. My legs would always feel swollen, but not swollen,” Gibson said.
When she went to a doctor for help, she was advised to take antidepressant medications, although Gibson insisted that there was something physically wrong with her. At one point, she was referred to an endocrinologist who performed tests, but found no inflammation.
Gibson was told there was nothing wrong. But after seeing several specialists, it was suggested she may have fibromyalgia.
Fibromyalgia causes widespread pain, fatigue, and other symptoms such as sleep, memory, and mood problems. This causes a disturbance in the way the central nervous system processes pain, and this makes people more sensitive to it.
“I thought I had cancer or something. Honestly, I didn’t know what was wrong with me. I’d never been sick before. I’d never felt like this before, and I’m not one to tell people I’m sick, or that I’m in pain. I’m just one to deal with it.”
When Gibson, who owns two businesses, started researching how to help her symptoms, she said many people didn’t believe she struggled with chronic pain.
Dr. Andrea Furlan, Associate Professor in the Department of Medicine at the University of Toronto and author 8 Steps to Conquer Chronic PainSaid that people with fibromyalgia can look normal, laugh and have fun. But they need validation to show how much pain they are in.
Gibson said women’s bodies have not been studied enough, and stigma against women is very evident in the health care field.
“We carry a lot, like guilt and burden.”
Meanwhile, Furlan said the Canadian government needs to recognize the burden of chronic pain on society.
“Chronic pain costs health care systems more money than heart disease, diabetes and cancer combined,” Furlan said.
That’s why the 2019 Canadian Pain Task Force report could be a big game changer, he said.
Canadian Pain Task Force Report
Health Canada created the Pain Task Force in 2019. It had three years to lead a national consultation about people living with chronic pain. The goal was to recommend concrete actions that would improve people’s recognition of pain – especially in the health care system.
The task force put forward this Recommendation Report in March 2021 At the height of the COVID-19 pandemic. Amidst that chaos, the report received little media attention and flew under the radar.
Maria Hudspith, co-chair of the Canadian Pain Task Force, said the report has been difficult to convey to the public and health-care professionals.
“There was a global pandemic. There were actually several federal elections in that short period of time. There were changes of ministers. There was a huge amount of turmoil,” he said.
Hudspith and her colleagues have long advocated for awareness of chronic pain.
“It’s having a huge impact on people’s lives, but it’s still not seen and the pain is still considered a symptom of something else,” he said. “And the health care system is busy looking for something else, and not thinking about solutions and management of pain.”
Hudspith said that historically, physicians have been poorly equipped to assess and treat chronic pain, and women’s concerns are often dismissed. He said there is little focus on chronic pain in Canadian medical school curricula.
People who live with chronic pain are four times more likely than the general population to suffer from depression and anxiety, and they are twice as likely to die by suicide or experience suicidal ideation, Hudspith said.
Meanwhile, Singh said that doctors, like all individuals, “reflect society.”
“I think it’s important to recognize that, because there’s a lot of pressure on our health care system right now,” Singh said.
She said the health care system largely does not allow physicians to discuss the menstrual cycle because it “can have a devastating impact on these girls and women.”
In recent years, pain curricula have been added to all 17 fully accredited medical schools in Canada.
Hudspith said there are many continuing professional development courses, many of which are offered free of charge through Penn Canada. The authors of the pain report will continue to reach out to physician organizations with recommendations and resources.
