THE University of Windsor works with Canadians who share their stories of medical gaslighting.
“This kind of thing can lead to death,” said Marissa Rakus, study coordinator.
“It was extremely traumatic,” said medical gaslighting victim Katrina Dobson.
Although it is a newly coined term, medical gaslighting has been around for decades and primarily affects women and minority groups.
Medical gaslighting can be described as the experience of being disbelieved, not taken seriously, and dismissed by medical providers – with many health issues being reduced to issues with weight, hormones, or mental health.
Katrina has been diagnosed with various chronic illnesses like Eagles Syndrome, a rare bone disease that causes severe neck pain; hypermobile Ehlers-Danlos syndrome, a genetic connective tissue disorder; and mast cell activation syndrome, a condition that causes recurrent allergic reactions.
She has experienced medical gaslighting in more than one situation, which almost cost her her life. “I sat in the hospital for five hours. My throat tightened. I couldn’t breathe. I was red,” Katrina said.
“And then finally, once in the room, the nurse asked me if I had intentionally ingested the nuts and that I had no real reaction.”
In one case, the hospital even called her husband to confirm she needed a breast pump.
“I was completely flabbergasted,” said Landon Dobson, Katrina’s husband.
“They called me and asked if she was actually breastfeeding. Yes, she was. And they didn’t believe her.
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Situations like this caused Katrina to doubt herself and avoid further visits to the doctor.
“I would always have felt hypochondriac, as if I were a suffering child. It’s in your head. You are lazy,” Katrina said.
“I’m at the point now where I’m giving up on (my medical issues) and that’s not healthy for anyone.”
But Katrina is not the only one who had to go through such situations.
The University of Windsor is conducting a study into medical gaslighting experiments across Canada.
Researcher Marissa Rakus says almost every woman you meet has at least one story of medical gaslighting.
“The medical system was built by men for men,” Rakus said.
“Women weren’t even included in medical clinical trials until the 1990s, which really isn’t that long ago.”
Rakus said many of these problems come down to a lack of research and education, adding that this is a systemic problem and not an individual problem with doctors.
“It depends on the actual training provided in medical schools,” Rakus said.
For women and people from minority groups, Rakus says health issues require more research and training to treat effectively – the addition of medical gaslighting may cause patients to stop using believe in their lived experience.
“You feel like you’re going crazy, you become anxious, depressed, isolated from those around you because you’re in so much pain or whatever the situation is that can also lead to trauma,” Rakus said.
She added that doctors need to be more open and willing to listen.
“It’s not just about making a diagnosis or, you know, having an answer for them. That’s because I hear you. I listen to you and I will be on this journey with you to help you understand,” Rakus said.
The Dobsons say that advocating, researching, joining support groups and providing assistance during medical appointments can help reduce the risk of experiencing medical gaslighting.
“Everyone needs to speak up, otherwise there will be no change,” Katrina said.
“Go ahead and make sure you get a second opinion and just advocate for yourself,” Landon said.
Rakus adds that teamwork is key.
“I 100 percent think it takes a collaborative effort because, you know, the lived experience of patients and what they’re going through determines what the doctor studies,” Rakus said.
The University of Windsor study is accepting participants digitally until February.
A medical study on gaslighting conducted by the University of Windsor.
University of Windsor
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