How these TMU women have been dismissed and overlooked by the healthcare system
At 21 years old I had enough. I spent at least two days out of every month for the past six years in agonizing pain and it was getting hard to believe that this could be “normal.” It felt like my period was trying to kill me and I wasn’t going down without a fight.
I demanded that my doctor refer me to a gynecologist or anyone that could help me.
I listed off my tumultuous six-year menstrual history to my family doctor.
The different medical professionals I had seen since I was 16 years old, classes I’d missed because I couldn't get out of bed, prescription medications that did nothing for me, the ultrasounds and the 4 a.m. visit to the emergency room after excruciating pain left me screaming because it was just too much to bear. Once I finished my extensive list of complaints, we both sat in silence as he thoughtfully typed notes onto his computer. Finally, he spoke. He said he understood and appreciated that I wanted to see a gynecologist—whatever that means—and paused before asking earnestly, “Have you ever tried taking an Advil?”
Cut the cameras. Deadass.
I had first heard about endometriosis on social media.
Celebrities like Eve and Halsey were on daytime TV speaking about symptoms they had been living with for years that were dismissed as ‘just bad periods.’ According to Johns Hopkins Medicine’s website, endometriosis is a painful disorder affecting about seven per cent of women in Canada, that occurs when endometrial tissue grows outside of the uterus instead of on the inside. Symptoms can include painful periods, heavy menstrual bleeding, possible pain during intercourse and infertility. While there are treatments available, many women, including some Toronto Metropolitan University (TMU) students like myself, go undiagnosed because period pain is so normalized and receiving a definitive diagnosis can require a super-invasive procedure.
Currently, I have no formal diagnosis, but it seemed odd that in all my time in and out of doctors' offices complaining about the same issue, no one had raised endometriosis as a possible explanation for my pain.
When dealing with health issues, many women students at TMU echo a similar sentiment: they don’t receive the help they need when they need it.
Students say there is a lack of empathy and understanding from healthcare professionals, who instead of helping them with their ailments and discovering the root causes of serious health issues, dismiss their accounts for menial reasons.
As women continue to shatter glass ceilings, there is one barrier that can often go overlooked. According to a 2000 study in the New England Journal of Medicine titled “ Women and pain: Disparities in experience and treatment,” w omen often go misdiagnosed or undiagnosed by healthcare professionals either because their symptoms aren't taken seriously or there isn't enough research showing how diseases present differently in women versus men. The same study found that women are seven times more likely to be misdiagnosed and discharged in the middle of a heart attack because women have different symptoms altogether.
“Hormonal fluctuations through a [menstrual] cycle plays a lot of variables into what [researchers] are studying,” says Nicole Bendayan, a TMU grad and a certified holistic nutritionist who specializes in menstrual health in Spain. ”It's a lot more variables, it's a lot more expensive and it's a lot more work.”
In a Washington Post article titled “From heart disease to IUDs: How doctors dismiss women’s pain ,” author Lindsey Bever __ discusses how __ women’s pain is not treated the same way men’s pain is treated, because of the false belief that women are overly sensitive and exaggerate symptoms, causing their verbal complaints to be overlooked.
“Women who express their pain are deemed to have a higher threshold for pain, especially for Black women, so it takes them longer to get diagnosed,” says Bendayan.
This lack of treatment and understanding can have lasting impacts. Students say their negative experiences with misogynist healthcare professionals who dismiss their serious concerns, leave them feeling discouraged from seeking help.
“You don’t want to be presented with someone who doesn't believe you and who dismisses you and tells you nothing’s wrong even though you know there is,” says Bendayan.
In November of her Grade 12 year, Marilyn Saad, a third-year child and youth care student at TMU became really sick. She was coughing and throwing up, but by nature wasn’t the type to let sickness slow her down. She brushed it off—thinking it was just a cold—but her mom eventually convinced her to go to the doctor just in case.
Saad said she could hear a rattling as she breathed in and out and felt an unusual pain in her chest. But after checking with a stethoscope, her doctor assured her there was nothing to worry about.
The next morning, she woke up vomiting and as her chest pains became more severe, she was rushed to the emergency room.
What was dismissed as a cold by her physician turned out to be severe pneumonia.
“If you waited just a little bit longer, your left lung would have collapsed...you could have died,” she remembers the ER doctor saying.
This wasn't the first time a physician had dismissed Saad. At the age of 13, she says she was having issues with her mental health. She decided to tell her family doctor she was feeling nervous and scared all of the time.
“He was like: ‘Are you sure you aren't doing this for attention?’”
Saad says comments like this have had an effect on how she views her health now and caused her to seek validation about her symptoms from people around her.
“I get scared now and I feel like I need multiple opinions because the one person who is supposed to make informed decisions on my behalf is not fucking doing it.”
Kyra Jonker, a registered nurse in Kingston, Ont., says she has seen medical sexism daily working in the emergency ward.
“You expect women to be expressive and dramatic, so if they're tough, you don't believe they're in pain,” Jonker says.“But if they’re expressive they're not really believed either.”
Jonker says they even find themselves falling into this trap of overlooking women’s issues. She recalled a specific example where she assumed a woman’s chest pain was just anxiety, but it was later revealed that the patient had a rare form of diabetes and her symptoms were causing her to be anxious.
“It's so dangerous to make those assumptions,” Jonker says. “Would I have done the same thing if it was a guy? Maybe but maybe not because it's so much easier to say it's anxiety or women are dramatic.”
When Claudia Matas, a fourth-year performance production student, decided to seek help for her mental health, a friend recommended that she go through TMU counselling services for therapy. Matas filled out all of the paperwork which asked if she had any preference of who she wanted to see and her only preference was to see a woman.
“I just trust a woman to understand what I’m going through and to empathize with me,” she says.
Matas shared her history of anxiety and depression with the counsellor and a recent car accident she had been in that had led to anxiety attacks and intrusive thoughts.
“I would explain things during the call and I would notice she wasn't listening.”
Rather than feeling relief, Matas hung up on that phone call feeling discouraged.
Days after their consultation, her counsellor sent an email with her final recommendations
to proceed. To Matas’ disbelief, the counsellor had concluded that her symptoms did not demonstrate a need for immediate help.
“She was basically like ‘you are not mentally ill enough for us to help you.’”
The counsellor provided the numbers for therapists around Toronto, though Matas had previously explained that assistance outside of school insurance was not an option she could explore for financial reasons. The average cost of therapy in Canada can range from $50 to $300 per session.
According to Mental Health Research Canada, women under 25 are overrepresented among those with anxiety and depression, but tend not to seek support because of the inability to pay or lack of insurance coverage.
Matas says the final line of the email read, “If there’s any problems, these guys will always help,” followed by the suicide hotline number.
She says she is only just now reattempting to seek help through her family doctor. It has taken some time because, for her, the previous experience was so invalidating and made her feel like maybe she had been making everything up.
“I was just in this state of mind where I was like ‘Ok. I’m just lying and I won’t get any help. I can make it work.”
In a statement to The Eyeopener regarding some students' concerns with the university's counselling services, President Mohamed Lachemi said while he's sorry to hear these experiences, TMU counselling services are open to feedback. "The student wellbeing team is always looking to improve and increase health and wellbeing support for all students," he said.
For Allie Burn, a recent fashion communications graduate from TMU, years of being undiagnosed for ankylosing spondylitis (AS) has had a long-lasting effect.
AS is an autoimmune disease that, according to Mayo Clinic, can cause your bones and joints to fuse over time. For Burn, the road to diagnosis wasn’t quick or easy.
She began experiencing unusual symptoms around the time she turned 16. Joint pain, redness in her eyes and
in her mouth that prevented her from speaking and eating. She had seen a few doctors who began treating each of her symptoms individually, concluding that her red eyes were just chronic pink eyes and the sores could be explained by a vitamin deficiency.
Eventually, she was referred by a campus doctor to a rheumatologist, a doctor who specializes in the treatment of muscles, bones and joints.
“[Seeing the specialist] was my first experience with feeling like I was not listened to at all,” Burn says.
She says the rheumatologist told her he couldn’t see anything wrong with her now but said that might change. His advice was to just exercise and stay at a healthy weight, though Burn says she was already quite active.
The doctor also implied that her symptoms and generalized pain could be related to her mental health and suggested she look into medication for anxiety, which looking back at it now, makes Burn laugh.
“After that, I was afraid to go to the doctor. I didn't feel comfortable speaking to people about it,” she says. “Because there were no obvious signs of an issue, I felt there was no way I could be taken seriously.”
But the pain persisted and by her second year of university, she felt her health seriously begin to decline which took a toll on her day-to-day life.
At the same time, she had been introduced to the topic of disability in fashion in one of her classes. She sat in on a panel where one of the speakers talked about their journey getting a diagnosis for a chronic illness. A story that resonated with Burn.
“At that point, I made the decision that I needed to start advocating for myself,” she says.
But it wasn't until two years later that Burn was referred to a female rheumatologist in Toronto who ran tests which came back to confirm something was definitely wrong.
Burn’s doctor concluded that she had AS. It’s a difficult disease to diagnose but there are various experimental treatments available and an earlier diagnosis could have prevented serious damage to her body, Burn says.
I was finally able to see a gynecologist a fter a seven-month-long wait, and the outcome wasn’t far off from my previous experiences.
The doctor was dismissive, I felt unheard and I was presented with only two options: go on birth control or deal with the pain. Since then, I’ve taken it upon myself to learn more about my body and the way it works and have explored alternative healthcare options that have been extremely beneficial. I may never know for sure if I have endometriosis but this experience has taught me a valuable lesson about being more assertive about my own health.
To women who feel they are being dismissed by healthcare professionals, Jonker’s advice is simple.
“You just have to keep advocating for yourself. I know it's so hard but you have to,” she says. “As women, we might not be listened to as well as we should be but you have to fight for yourself. You know what you need.”
A huge part of this is educating yourself and knowing the right questions to ask doctors, says Bendayan.
“When we’re armed with knowledge. We can do a lot more and be active participants in our healthcare.”