One reason I’m finding it hard to move past The Cancer Experience™ is that I am still having significant physical symptoms. Moreover, when I had (different) symptoms in the summer, they turned out to be from a specific cause (suspicious thyroid nodule) that led to surgery. So I am now hyperattuned to my body, and inclined to suspect it of betrayal.
Yet I am also entirely aware that anxiety can have physical manifestations, and all my current symptoms are inconsistent—though persistent. This results in a constant internal dialogue about whether they are “real” or imaginary.
One might think the answer to this dilemma is to go to the doctor. But the nurses who answer the phone, who are used to dealing with anxious cancer survivors, quickly dismiss things that do not fit into very specific boxes. Nor does my primary care provider appear to think there is anything treatable going on; her main recommendation is to give it time.
All I know is that I have not felt well for months, that I have ongoing but unstable issues that are not obviously the aftereffects of treatment, and no answers. And an endless cycle of wondering whether I should be doing more to have them medically addressed in case they are serious, or working harder to ignore them and accept that this is life after cancer, since my medical professionals seem to think they are inconsequential.
I have started to think of this dynamic as a form of gaslighting. Paige Sweet writes about gaslighting as “a set of attempts to create a ‘surreal’…social environment by making the other in an intimate relationship seem or feel ‘crazy.’” She argues that gaslighting involves mobilizing gender and other social inequalities to erode “victims’ sense of reality, autonomy, mobility, identity, and social supports.”
There is no ill intent here, of course. I do not suspect my medical professionals of trying to make me think I am crazy as a form of control. Yet there is something about the situation that does indeed damage one’s sense of reality. Because I feel what I feel, but the reaction is, there’s nothing going on. So is it just me?
There is almost certainly a gendered component to this (despite my all-female medical team), and I do think my perceptions would be taken more seriously if I were male. And, doubtless, less seriously if I were not white and professional-class.
But there is a fundamentally structural component. Part of the reason that symptoms are dismissed is that care is fragmented and often rushed. There is no history to give the context that I am someone who rarely went to the doctor before all this. There is no time to consider that perhaps two things are happening at once, or that there is some other reason that these symptoms don’t immediately map onto expectations.
The oncology office brackets off things that aren’t cancer; the GP’s office is unfamiliar with the side effects of cancer treatment. And the process of getting care—wait on hold for 15 minutes to leave a message, be available to take a return call at whatever time of day it happens, make it through a system of nurse triage that seems mostly designed to keep patients away from the office—all seems designed to convey the message, “don’t contact us unless it’s REALLY IMPORTANT.”
Which, of course, leads to second-guessing oneself. Is it really important? Maybe it’s nothing. It’s persistent, but it’s not that bad. Let’s just give it some more time.
It also leads to an incredible amount of attention to self-presentation in order to ensure one is seen as “legitimate” in seeking care. How do I convey what’s going on in a way that is strong enough to gain attention without overstating my actual experience? How do I express enough emotion to convey that symptoms are bad but not so much that they’re dismissed as the product of anxiety? If I know that certain words get attention and others do not, do I use those words, even if they don’t perfectly map onto my actual experience?
What I wish for is a system that involved actual human attention. So that if you feel like shit, you could see the same person for every two weeks for twenty minutes and troubleshoot. A system that could take seriously the possibility of both physical and mental causes without being dismissive of either. That was interested in addressing the consequences of cancer treatment, rather than just seeing it as better than the alternative, have a nice life.
Honestly, I don’t think I realized until writing this just how much anger I have at the medical system, despite the fact that I have had some excellent individual providers and what passes in this system for top-notch care. It is not an issue with individual providers; it is about the organization of care. And if I were in more of an intellectual mood, we could take apart the reasons, professional and organizational and economic, that it has taken the form it does.
But mostly I’m just pissed off. I owe my life to our medical system. But it’s caused damage of its own.