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Maintaining Agency in Health Care

[Content warning: this piece includes frank discussion of vaginal anatomy and its treatment.]

When asked to write a feature for the Arthur’s women’s issue, I was instinctively drawn to doing a piece based on my own experiences. As a young magazine editor, I had initially thought to write about the challenges of being taken seriously in a professional environment while simultaneously being trapped a woman’s body and a womanly voice.

Too often, I suspect, guest columns are victims of their own perspective. So, after peeling back layers though, peering down the corridors and determining what it is that is foundational to a woman’s well-being, I encountered a more fundamental barrier to improving the life of women in Canada: the challenges we face in receiving adequate health care. Monetary success, fulfilling careers, maintaining a healthy relationship with others are of course of tremendous importance. But none is as important as being housed in a brain and body that receives adequate medical attention.

Trent Absynthe editor Erin McLaughlin. Photo by Berfin Aksoy.

It is a route which, to be terribly candid, I know very little about, but is still deeply threaded into my self-perception and day-to-day experience as a woman. That is, the lack of agency women often get to practice in Canadian health care institutions when seeking treatments unique to women. From dealing with our ruptured ovarian cysts, oral birth control, period cramps, to postpartum depression and pregnancy, the medical community has consistently let us down.

Those deemed medical experts are often granted a difficult-to-deny, but overwhelming authority on a woman’s body – to what is happening to it, decisions on the appropriate treatment it should receive and whether she has the right to be worried. And when fear strikes a female patient, when her body acts in ways she does not understand, she is labelled as “delicate,” “dramatic” and “ignorant”, making it all the more daunting for her to reach out to a professional, instead waiting weeks or months before finally getting help.

My body, my mind, the world of medicine, are all mysteries to me, and thus the amount of trust I place in my doctor is substantial. To be given misleading information from them can, and has, have severe repercussions in my life. And I am in no way unique in this.

As someone whose mental health has always been a finicky little beast, how it will be affected is something that weighs on me while making decisions about the chemicals I ingest. And so several years ago, when I visited a clinic to get a prescription for birth control, one of the first questions I asked was: “Could this drug spark anxiety or depression?” In an instant, the doctor dismissed my concern. “That’s a myth, and nothing to concern yourself about.” I was left with the bitterness of feeling dumb, a naive victim of hear-say.

I took the medication for about three weeks. What ensued was one of the worst depressive periods I have ever experienced. Hardly leaving my room, eating or seeing people, more than one loved one pushed forth the argument that perhaps the depression was a symptom of the drugs. This, I, imitating my doctor, shrugged off. After hitting a peak, of sorts, and excessively researching the link between mental health and birth control, I quit cold turkey (which in retrospect probably wasn’t the best idea). I soon began recovering and began to feel normal. Had I not had friends whom I trusted or resources like the Internet, I may have not.

Pap test procedures are commonly practiced on women riddled with misinformation from the examiners. According to a midwifery student, “There is a huge problem with the way we present some medical procedures as mandatory, when in fact they are just options.”

This is especially problematic with pap tests – which can be triggering for women who have had negative sexual encounters in the past, but feel forced to proceed with the test anyway, under the impression that it is vital to their health. The midwife student’s program teaches future midwives to frame the procedure as a choice, to make it clear that the person receiving the test that they can use words like “stop” or “out” throughout the procedure. It should indeed be up to the individual to determine whether or not a particularly intrusive treatment such as a pap test is not worth a compromise of their mental wellness.

Evan Nelson was in grade twelve when a “horrible pain” began intruding on the right side of her abdomen. “It was my first major health crisis, and I was in the dark,” Evan says. “My mom is physically disabled. She had a really hard time getting her health problems addressed. They were passed off as things from anxiety, to a bipolar disorder. So historically I knew that not being taken seriously was par for the course, and that you have to fight to have your feelings understood.”

When Evan discussed the pain, her doctor dismissed it simply as particularly unpleasant period cramps. “I tried telling them that I know what period cramps are, but doctors are very hard to say no to. I thought they knew better than I did.” After seeking out a second opinion from another doctor, Evan was told that she had an ovarian cyst rupture. While this did little for the pain, the feeling of validation was, at least, a relief.

Despite what I have experienced, as a straight, cisgender white woman I am in a comparatively fortunate position. For non-white, non-heterosexual and non gender-conforming brains and bodies, the experience of interacting with medical professionals is often even more unsettling. In the U.S., a black woman is about three to four times more likely to die from pregnancy or childbirth complications than a white woman. Women who identify as lesbians with no intention of having or history of engaging in penetrative sex struggle to get appropriate care for conditions like vulvodynia. These women find themselves dealing with doctors who are unable to stretch outside of heteronormative assumptions regarding how much pain a woman should have to endure in order to get a penis to fit inside her vagina – as if it goes without saying that this is their endgame. Of course, male minorities in Canada too have been known to receive a lesser quality health care than white people. One need only look at men living in Indigenous arctic communities, whose life expectancy, at 64, is far below even the global average.

The ways in which bodies can be different from each other spreads far and wide, and when it comes to getting appropriate treatment, I am lucky to fit within what is considered normal, but medical institutions must be flexible, accommodating and respecting all bodies.

To practice agency, to have a sense of control over one’s body and destiny, our options should be transparent. Our uniqueness, embraced and recognized. We must receive clear explanations of the nature of the treatment we are subjected to. To be denied information – whether the intention is to simplify, limit distress or dismiss naive concerns, is to have our own freedom curtailed. The right to make decisions for our own bodies must not be limited.

There is little to be gained by attempting to provide an answer to why so many of us face such indignities from the medical community. I cannot even provide an answer on how we can go about fixing it. But I take comfort from the feeling of solidarity given when these experiences are shared among those of us who have been made to feel small by the status quo. In the meantime, I am going to trust my relationship with my body, and demand that this trust is respected.

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