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.”
Bakaluk struggled with loneliness, isolation, anxiety, depression and even suicidal ideation.
“It was never because I don’t want to be on this earth anymore. It was just 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 response didn’t stop with her eventual diagnosis.
“I would tell them I have endometriosis. I’d be bawling in the hospital and they’re like, ‘Oh, you’re just a drug seeker. You’re just attention seeking. You just like the pain medications.”
Diagnosed 11 years later
Dr. Sony Singh, with the Society of Obstetricians and Gynaecologists of Canada, said that if a woman has lived with chronic pain, suffered with diagnosis delays and has been dismissed again and again, that’s a shared responsibility amongst providers and families.
“I hear 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 don’t show visible signs of pain. Women of colour report facing even more discrimination and barriers to health care support.
Invisible illnesses affect women disproportionately due in part to gender bias in medicine. Singh said it’s the job of health-care providers to let these women know that what’s happened to them is because Canada doesn’t have a system to support them.
“So depression, anxiety and other mental health issues are related because if you’ve suffered in pain that long and haven’t gotten help, how do you possibly cope?” Singh said.
At age 21, doctors found what they thought was a cyst on Bakaluk’s ovary. It turned out to be ovarian fibrothecoma — a rare, benign tumour of the ovary.
Bakaluk underwent surgery to remove the tumour. It was then that endometriosis lesions were discovered in her body. When her doctor told her, she felt immense relief — accepting finally that she “wasn’t crazy.”
“After all these years, just to have a little bit of belief … I started bawling when he told me. I finally had a reason that I was in so much pain,” said Bakaluk.
The fog of fibromyalgia
In 2020, Amanda Gibson began noticing changes in her body that scared her.
“I would get electric shocks down my arms. My skin hurt, brain fogs, headaches. I would just get really weird sensations all over my body. My feet always felt like they were swelling, but they weren’t,” Gibson said.
When she went to a doctor for help, she was advised to go on antidepressants even though Gibson insisted something was wrong with her physically. At one point, she was sent to an endocrinologist who ran tests, but found no inflammation.
Gibson was told nothing was wrong. But after seeing multiple specialists, it was suggested she might have fibromyalgia.
Fibromyalgia causes widespread pain, fatigue, and other symptoms like sleep, memory and mood problems. It causes dysregulation of how the central nervous system processes pain, and that makes people more sensitive to it.
“I thought I had cancer or something. I honestly did. I didn’t know what was wrong with me. I had never been sick before. I had never felt any of this before, and I’m not one to tell people that I’m sick, or I’m in pain. I’m one to just work through it.”
When Gibson, who owns two businesses, started researching how to help her symptoms, she said many didn’t believe she was dealing with chronic pain.
Dr. Andrea Furlan, associate professor in the department of medicine at the University of Toronto and author of 8 Steps to Conquer Chronic Pain, said those with fibromyalgia can look normal, laugh and have fun. But they need validation to share just how much pain they’re in.
Gibson said women’s bodies aren’t studied nearly enough, and that stigma against women is very evident in the health-care field.
“We carry so much, like guilt and burden.”
Meanwhile, Furlan said the Canadian government needs to recognize the burden of chronic pain on society.
“Chronic pain costs more money to the health-care systems than cardiovascular, diabetes and cancer combined,” Furlan said.
That, she said, is why the 2019 Canadian Pain Task Force report could be a huge game changer.
Canadian Pain Task Force report
Health Canada created the Pain Task Force in 2019. It had three years to lead a national consultation around people who live with chronic pain. The goal was to recommend concrete actions that would improve people’s recognition of pain — particularly in the health-care system.
The task force put out its recommendations report in March 2021 at the height of the COVID-19 pandemic. Amid that chaos, the report received very little media attention and flew under the radar.
Maria Hudspith, co-chair of the Canadian Pain Task Force, said getting the report out to the public and health-care professionals has been difficult.
“There was a global pandemic. There were actually multiple federal elections over that short period of time. There were changes of ministers. There was a huge amount of upheaval,” she said.
Hudspith and her colleagues have long advocated for awareness around chronic pain.
“It’s having a huge impact on people’s lives, but it’s still not seen, and pain still is thought of as a symptom of something else,” she said. “And the health-care system is busy looking for that something else, and not thinking about addressing and managing pain.”
Hudspith said historically, physicians have been very poorly equipped to assess and treat chronic pain, and women’s concerns are often dismissed. She said there has been very little focus on chronic pain in Canadian medical school curriculum.
Hudspith said people who live with chronic pain are four times as likely as the general population to live with depression and anxiety, and they are twice as likely to die by suicide or experience suicidal ideation.
Meanwhile, Singh said doctors, like all individuals, “reflect society.”
“I think it’s important to recognize that, because right now we have a significant stress on our health-care system,” said Singh.
He said the health-care system has largely not acknowledged or allowed physicians to discuss the menstrual cycle as “potentially causing catastrophic impact on these girls and women.”
In recent years, pain curriculum has been added to all 17 fully accredited medical schools in Canada.
Hudspith said there are multiple continuing professional development courses, many provided freely through Pain Canada. The authors of the pain report will continue to reach out to physician organizations with the recommendations and resources.
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