By the time I was 24, I knew many different types of pain. I was diagnosed with breast cancer at 23 and had undergone a mastectomy, chemotherapy and breast reconstruction. I knew the soreness of surgery and sleepless, painkiller-laden nights. I knew the pain that splinters in your bones after a round of chemo, like fiberglass shattering with every bend of the joint. I knew the gasping emptiness of loss. Still, after I experienced what I thought to be flu-like symptoms after having my chemotherapy port removed, my oncologist wasn’t convinced I was experiencing anything at all.
I had the port removed on a Friday, a relatively simple surgery that quickly became hellish as I had originally opted for twilight anesthesia to quell my anxiety but was encouraged to go without as it was late in the day. And so, as I had the chilling realization the surgeon was not going to turn off the Pearl Jam Pandora station before numbing my chest and cutting into me, my port removal began. It ended, predictably, in a panic attack when the surgeon showed me what my port looked like, a tiny plastic spaceship of a thing, covered in blood. Surgeons have really morbid senses of humor because they have to deal with so much horror, and normally I would be into it, but there is something about your own body being involved that invokes another level of grotesqueness. I, like most people, enjoy the illusion that I am a whole and bounded being.
The weekend after my port removal I felt awful. My legs felt heavy and it was an effort just to get up the stairs to my bedroom. I thought I must have caught the flu, but on Monday I trudged to work anyway, calling my oncologist’s office multiple times. She didn’t get back to me, but I had to go in to the center for an echocardiogram that afternoon anyway. And so, after my echo, I went up to try and get a word in with my oncologist. I was met with a woman who was not my oncologist, and who claimed my oncologist was not there, even though I later learned she was. This other oncologist accused me of trying to get more pain killers. She dismissed my experiences out of hand. I was crying and pleading with her to consider that something could be wrong, that I was panicking, when my cardiologist called and told me to go to the emergency room. I had a blood clot in my heart.
The next day, after I had been admitted to the hospital, my heart stopped and I fell on top of my mother. She watched me flatline on the heart monitor and called for help. I spent two days in the ICU. My oncologist came in to apologize and I remember feeling like it was very empty. It is no longer easy for me to trust my doctors.
It was hardly the last time I’ve had a doctor ignore my pleas for help with a medical condition, either. Just a few weeks ago I had an entirely different oncologist try to attribute pain I was experiencing in my ovary to my anxiety and depression, and the same helpless feeling crept back in. This feeling of, “If I can’t get the people who are supposed to help me to listen, who will help me?” This fear that you can be ignored to death because your concerns weren’t taken seriously. The weight of having to be your own best advocate on top of needing to heal.
Doctors ignoring female patients’ pain has been well documented. In fact, a National Pain Report survey found in 2014 that over 90 percent of women with chronic pain feel discriminated against by the medical system.In a time where we now know period pain can be almost as painful as a heart attack, how does the medical system continue to justify this bias against women? What more can we do to legitimize our pain?
The healthcare industry needs to start listening to women and educating on doctors on biases they may not be aware they are acting on. Because, trust me, it is killing us.