What it's like when you know your body better than your doctors do
I recently had an experience with a new doctor that was all too familiar. I have a long history of being made to feel like I know nothing about my own body when I seek help, but I recently moved to New York and I hoped that doctors here would be different. I set up an appointment with a new doctor simply to establish care, and crossed my fingers.
On the day of the appointment, I sat down in the leather chair in his office, hoping to be in and out in 15 minutes, but it soon became clear that wouldn’t happen.
“Explain to me again what the BRCA2 result means?” He was looking through the medical history I’d discussed with the nurse a few minutes prior.
I decided to humor him. “It means I have about a 45% chance of getting breast cancer in my lifetime, and a higher risk of getting ovarian cancer, as well.”
“And how are you planning on taking care of that? A double mastectomy, I presume?”
I was taken aback. I am not, in fact, planning on having a double mastectomy — and actually, through my own research, I’ve found that with the BRCA2 mutation, an oophorectomy (removal of one or more of the ovaries) may make more sense. I’m not planning on getting either procedure unless I actually begin developing cancerous cells in my body. The BRCA2 gene is a gene that produces tumor suppressor proteins, and having a mutation of that gene means that DNA damage may not be repaired properly, and thus, tumors are more likely to grow. While the BRCA2 gene mutation is an indicator that I am more at risk for certain cancers than others are, it is not a guarantee, and I have decided not to take drastic measures unless they’re absolutely necessary. I discussed my options with my previous doctor, and have opted for vigilant exams — such as vaginal ultrasounds, MRIs, and mammograms — instead. I told him this.
“But aren’t you worried about the radiation in your breasts from yearly mammograms?”
I had to stop him there. The thing is, I was there for a simple check-up; I wasn’t there for advice about how to handle my increased risk for breast cancer, I felt he was being overly patronizing. I felt like he didn’t believe I could possibly have thought through all the angles — like I could possibly know what’s right for my body.
I had just met this doctor, and he seemed to know next to nothing about the BRCA2 gene mutation, nor the potential routes of treatment — yet there he was, telling me the carefully planned course of treatment I’d planned and come to peace with should actually be cause for concern. However, it’s extremely unlikely that the radiation emitted from a mammogram once yearly, my chosen course of action, would give me cancer, and if these mammograms may potentially find cancer before it advances to a harmful level, I’m all for it.
While it’s true that he could potentially have wanted to double check that I’d thought everything through, or he wanted to get the most thorough history possible, or perhaps I simply reminded him of his daughter or some other loved one, it’s still irritating to be asked over and over if you’re “sure” that you know what you want. It can be tiring to be asked at every appointment, even appointments that are simply to establish care, if you’re “sure” that the plan you’ve devised — not to mention with another medical professional — is in fact the way you want to go.
The thing is, this isn’t the first time that I’d had my worries or decisions diminished by a doctor. The first time I’d felt a lump in my breast and asked my then-doctor to check it out, she asked in a gruff tone why I was so worried — after all, I was only 18. My family has a history of cancer, and my aunt had passed away from breast cancer only a few years prior, but the doctor I was seeing at the time made me feel silly for my concerns. When I informed my doctor that my aunt had passed away from inflammatory breast disease, she said, “No one DIES of that,” simply because I’d used the wrong term. I was shocked.
While it turned out that I have extremely fibrous breasts (which means that I’ll have to keep extra close watch for anything out-of-the-ordinary) and the lump was nothing, I switched doctors shortly after anyway. It was my first real taste of being made to feel like I didn’t have a right to speak up about my concerns in the examination room, but I knew it wouldn’t be the last.
It happened again a year later, when I sought help again for the headaches I’d been dealing with my whole life. My doctor, the doctor I’d switched to after the previous bad experience, told me that if I could still function in my daily activities, they were likely not migraines, even though I experienced them more than 15 days a month and had simply learned to deal with the pain. That misdiagnosis made it so that we ruled out a whole class of medications that could have helped, and also made me feel like I must have been exaggerating about my pain. It couldn’t be that I had just learned to push through — it couldn’t be that I was strong. When I asked for the type of painkillers that weren’t available over the counter for the days when the pain was too much to handle, she made me feel guilty, as though I was just there looking for drugs. She prescribed a medication I already knew didn’t work for me, despite my resistance.
These aren’t the only examples I have of being made to feel like I have to fight for my voice to be heard in a doctor’s office, and I’m certainly not the only one with experiences like this. It can often feel like we are either being talked down to and we must not know what we’re talking about, or the flip side of the coin — like we’re complaining too much, and our pain must not be as extreme as we think it is.
Women’s pain is often seen as “less extreme” than men’s pain. Whether it’s period pain, childbirth, or other complaints of pain from women-identified individuals, we are often fighting a losing battle when we ask for acknowledgment. Part of this is due to gender bias in medicine — partially because there’s an insidious idea floating around that men don’t complain, so if they do, something must be really wrong. Part of it is because many of the diagnostic tests were developed for male anatomy, and women suffering from things such as heart disease simply have different symptoms.
Whatever it is, it’s starting to change — but it can’t change fast enough. People are speaking out about their harrowing experiences in the medical system, and asking for a reevaluation of practices that lead to their mistreatment. There’s also an uptick in people talking openly about their own mental health issues, and having the strength to say that they may know their own minds and bodies better than anyone else. And we’re finally acknowledging that period pain can be as serious and devastating as pain experienced during a heart attack, which has been a long time coming — especially for sufferers of endometriosis.
Though this progress is great, it isn’t enough yet, and women are dealing with a lot of pain in the meantime. We deserve acknowledgment that we know our bodies better than anyone — we deserve to be listened to. So while it’s true that things are changing, in the meantime, I’m going to be the best advocate for myself that I can.