My cancer hospital had social workers call me, outside of scheduled appointments, just to check in. Beyond the oncologist tasked with curing me, I had a palliative doctor whose main concern was my comfort and symptom management. That attentiveness was nowhere to be found just a few months before I started cancer treatment, when I was in a well-regarded program receiving treatment for my depression. Where was my palliative doctor then? A doctor concerned with my quality of life, not just fixing me at whatever horrible cost—and still failing to? Where were the social workers to help with financial aid, connect me to support groups, and just generally cheer me on?
Platitudes about reaching out for help make me a little queasy, because often the help is the problem. Over the course of a decade of treatment, mental health providers have demanded I be a perfect patient to receive respectful care—“perfect” not just meaning hard-working and compliant, but also responsive to the treatment itself, as though lack of improvement stems from bad behavior. Do we blame patients whose cancer doesn’t respond to first, second, and third line treatments? Do we accuse them of “not wanting to get better?” Do we discharge them from hospitals and hope they figure it out on their own?
“Depression is extremely prevalent and associated with very concerning outcomes, including worse prognoses with other diseases and higher risk of death,” says my doctor friend. And yet, “depression is like a silent villain that we all just try to will away and then express frustration—often directed at the person suffering from the mental illness—when that approach does not yield results.”
To be clear: Having cancer was horrible. Cancer is really, really bad. Even if my treatment was comparatively better, there is no “good” experience with cancer, and living through it is a financial and psychological nightmare. But I was supremely lucky not only to be insured, but to live in New York City, which has some of the best cancer hospitals in the world. (It also has some of the best psychiatric programs in the world, which is horrifying to me.)
While my treatment as a mental patient has always been much worse, I did also experience cancer providers who showed a callous disregard for my suffering, to the point where I had to switch hospitals. Society still assigns moral failings to disabled people, including cancer patients, and my whiteness protected me from the worst of this. As cancer survivor and stem cell transplant recipient Walela Nehanda recently wrote in Time, about their decision to stop being a “good” cancer patient: “I have been forced to code-switch to sound white, or fragile, or non-threatening. On days my fatigue and chronic pain have felt unbearable and surreal, I have had to cast myself as kind because my symptoms alone did not make me human enough. I have overcompensated by appealing to the moral sensibility of medical professionals in order to be taken seriously; for my loved ones not to be disgusted by my illness and by association, me.”
This summer, when I was in the emergency room for a chemo-related infection, I overheard a nurse talking loudly to her coworkers about the hospital’s psych ward. “College students just go there wanting a vacation because they’re a little sad,” she said. “It’s so annoying. They all have borderline personality disorder, which isn’t really real.” While I can’t count BPD among my melange of mental afflictions, I got the message loud and clear: One of my illnesses is real and serious, and the other one is not only imaginary, but burdensome to the people tasked with treating it.
