For much of her life, Gabrielle Jackson lived with self-doubt.
She thought of herself as weak and flaky – that is, until she finally found an answer to all the symptoms she’d quietly endured, including severe menstrual pain, nausea, diarrhea and debilitating fatigue. Jackson had endometriosis, a chronic disease that affects an estimated one in 10 women of reproductive age, in which tissue, similar to the one that lines the uterus, grows outside of the uterus. She also discovered she had adenomyosis, where this endometrium-like tissue grows into the muscle wall of the uterus.
While learning about these diseases, Jackson, an associate news editor at The Guardian newspaper in Australia, discovered a wide range of conditions that affect women disproportionately or differently than men, but get short shrift.
In her new book, Pain and Prejudice: How the Medical System Ignores Women – and What We Can Do About It, Jackson examines the historical treatment of women in medicine and how they continue to be underserved.
As she explained to The Globe, this needs to change.
Why did you start your book with a tour of the female reproductive system?
I was just so surprised at how little I knew when I started writing the book. And when I really thought about why I knew so little about my body and how it functioned, I realized that not being taught about our bodies was part of this patriarchal system that wants us to feel shame and embarrassed about our bodily functions, and that’s part of the suppression of women throughout history. So I thought the first thing we should all do is learn about our bodies, and in a way that will help us understand what’s normal and what’s not.
Hysteria is no longer recognized as a diagnosis, but you mention it still leaves its mark on the medical treatment of women today. How so?
First, I think things like medically unexplained symptoms are just another name for hysteria. Women are more likely to be diagnosed with medically unexplained symptoms. But there’s also this idea that women can’t be trusted to tell the truth about what’s happening in their body. If a doctor sees a woman who has lots of symptoms and they can’t diagnose her immediately, they often just put it down to “it’s all in her mind.”
How does learning about a woman’s own sexual pleasure affect her ability to seek adequate medical treatment when needed?
There is such shame around talking about sex, and it really affects a woman’s or even man’s confidence to report sexual pain to their doctor. I was so surprised by statistics that a third of women have regularly painful sex, and I just thought, what kind of society is creating a situation in which a third of people aren’t actually enjoying something that is really integral to our well-being?
It’s really important to talk about what sex should be like and how it should be enjoyed, and point out that it is part of our health.
You mention women with chronic pain often get labelled as “difficult.” And one expert you interviewed suggests part of the problem is the language women use to describe their pain. How so?
Women’s voices have historically being left out of medical research and medicine, in general. And so there are two problems here. Doctors have been trained to look out for acute pain, like the pain you have when you break your leg or something. Chronic pain is a very new kind of disease state in medicine, and there hasn’t really been an acknowledgement that it works differently.
Then when women use words, like “stabbing pain” and quite dramatic, emotional words and language, it does bring up hysteria because doctors have not thought about these terms and what they mean, even though women use the same kinds of words over and over again. It’s not part of their medical training, so this emotional language might be immediately raising red flags for doctors who think that kind of emotion has no place in medicine.
You raise concerns that women with long-lasting COVID-19 symptoms aren’t taken seriously by health practitioners. Can you explain?
I interviewed a woman who said she had gone through years and years of trying to get a diagnosis of endometriosis. And when she started saying she hadn’t recovered from COVID, she was hitting the exact same road blocks. They’re like, “Oh, you’re just doing too much. Maybe you’re just depressed because of the situation,” and really not listening or even believing that she did have these long-term symptoms. And that’s borne out again and again.
You say in your book that medicine urgently needs to have a reckoning. What needs to happen to ensure women receive better care?
Medicine really needs to acknowledge its history of treating women very poorly. I don’t know how they would do that, but medical groups are very international, so I think they are more than capable.
I’m really concerned that a lot of women have deserted Western medicine in favor of wellness fads that have no evidence behind them because they feel they’ve been ignored. They go to their doctor and report these symptoms, and their doctors don’t believe them.
And I think medicine needs to start being serious about studying women. There was a rule in 2016 that the U.S. National Institutes of Health wasn’t going to give research money to studies on only male animals. And how did the scientific community respond to that? Well, sometimes they put one or two female animals just to tick a box. They need to take this seriously. If they actually want to treat half the population well, they need to actually understand their biology.
This interview has been condensed and edited.
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