I Must Not Look Away
In medicine, bad news can be good news
A day late on this because I had it scheduled for yesterday, but for some reason it just posted on the app and didn’t get sent out as an email
On the phone one afternoon in February, my mother said she was sorry about the results of my most recent biopsy: it's concrete evidence that the pills I’d been taking for two months weren’t making me any better.
I was crying on the other end of the line, but this wasn’t because of the test result. I was panicking about the time I’d have to devote, yet again, to insurance claims and calls to radiology centers and fasting for X-rays and traveling into the city mid-weekday when I wanted to be doing pretty much anything else. I was terrified of the hurt inside me, its unpredictable swerves from nothingness to razor-sharp pangs and keeling over, and the way I still had no proper way to explain it.
But hearing that my biopsy showed the wrong number of white blood cells was, if anything, a relief. For over a week I’d been trying to ignore the sourceless stabs in my ribcage, the abrasive onset of nausea after every meal, unsure if I could trust in this reality—and the news from my doctor told me nothing I didn’t already know, except that my pain was not imaginary, not invisible under the eyes of medicine.
I’m used to being told I’m fine as if it’s a good thing. Once when I was nineteen, a neurologist called my nerves beautiful. “You have the best nerves we’ve seen all day,” she proclaimed, moments before suggesting antidepressants. My dad joked later that she missed her chance to say “You have some nerve”—which would’ve been funny if the comments I actually received hadn’t left me ashamed for bothering to come in for the appointment at all. I left with a referral for an MRI, but after the doctor’s heavy reassurance that the test would probably find nothing, I didn’t even bother scheduling it.
More recently, another doctor prescribed an X-ray only after I pushed for something more than a pill that would cloak my stomach pain. It can be reassuring to know for sure that nothing’s wrong, he said in an email, and again I felt ashamed, certain I was just being overly anxious.
What I didn’t know at the time was that my symptoms were, in fact, the result of a diagnosable condition—meaning I was right to worry that pills would only delay a proper diagnosis. I knew the doctor meant the best when he implied that I had nothing to worry about, but he wasn’t the one suddenly being struck by days of indecipherable pain that could not be explained, could only be muscled through until it subsided.
Interactions like this didn’t console me. They made my symptoms feel worthless, unexciting, made pursuing a diagnosis feel futile, made me feel foolish for being disturbed by anything I felt. A month later, when I showed up for the X-ray, the radiologist refused to perform the test, claiming that the radiation was too much of a risk for such trivial symptoms. Disoriented by weeks of barely being able to eat, I started crying without meaning to, begged to just do the test I’d come in for, tried everything I could to convince him of how bad I felt. None of this worked—the doctor scoffed, said I could wait a little longer to see a specialist who wouldn’t jump straight to radiation, emphasized that my symptoms weren’t pressing enough to need immediate attention.
On the way home, I stared out the window feeling numb and hysterical, resolving to myself that I would tell no one about this, especially my friends who’d witnessed my inability to eat. I couldn’t stand admitting that there was probably nothing wrong with me save for a failure to cope with the benign. I was certain this was the end—I couldn’t face another doctor’s cheerful assurance that nothing was wrong.
I had stress dreams for days leading up to my most recent exam. Dreams where I woke up bleary and lay on the table while they promised me I was okay now, all good, that the pills had cured me and I just needed to proceed now. That any pain I still felt was simply me clinging to whatever attention I derived from suffering, that there was nothing more they could offer.
When I woke up for real, dazed by anesthesia, my kneejerk reaction was to argue without fully comprehending what the doctor was even saying—to exclaim that I wasn’t better at all, and what about my intestines? (To this, the doctor said, That’s not even what we were looking at).
Embarrassed by this anesthetized outburst, I dreaded the follow-up appointment, dreaded hearing the results with no veil of sedation to blur the reality, dreaded the sobering realization that my piercing hunger from skipping dinner the night before was no one’s fault but my own. Already, I feel like I”m in trouble every time I go to the doctor’s, like I’ve done something bad; I prepare an explanation in my head, consumed by preemptive shame for expecting someone else to fix what isn’t broken.
Rebecca Garden suggests that patients avoid revealing their suffering because of societal pressure to conform to a “good patient” role—framing illness around recovery in order to make others more comfortable. “Whereas any exaggeration of illness—that is, fictionalizing—is viewed as problematically inauthentic or even malingering,” Garden writes, “people who are ill or disabled are generally rewarded for an exaggeration of health or at least good nature, the cheerful stoicism expected of the ‘good patient.’”
When I got into that appointment, my doctor asked how I was doing, I couldn’t fight the “good patient” instinct. After hesitating for a moment, I said, “Oh, I’m fine,” trying hard to ignore the lingering pangs in my chest—and I couldn’t help feeling shocked when my doctor didn’t take my word for it, when she said that, based on my biopsy results, I wasn’t any better at all.
In the novel Life Sciences by Joy Sorman, the protagonist, Ninon, wakes up one day to find that even the slightest touch to her arms produces excruciating pain. Desperate to find the source of her symptoms, Ninon hurls herself into an onslaught of doctors’ appointments, and she finds herself devastated with the testing all comes back clear. “...Ninon feels betrayed,” Sorman writes, “furious that the machines are contradicting her version of things; she hadn’t expected this, the doctor’s dubious and nonchalant attitude, a diagnosis in the shape of nothing, the verdict given, an affront, that ‘nothing’ violently ringing out…”
As much as the diagnosis of an illness might seem like worse news than this “nothing,” this is only true if “nothing” is what you actually feel. If you feel something, meanwhile—something with a relentless grip on you, something that seeps through your daily routine and turns everything you touch to pain—diagnosis can be the ultimate solace, reshaping amorphous symptoms into something real, tangible. When I was given a diagnosis for my symptoms in December, I was more excited about this than getting my first freelance pitch accepted. Finally, I had certainty, credibility, permission to be genuinely distressed by what I felt—I could give people an acronym rather than vaguely hinting at stomach pain as a reason for not eating.
When Ninon is eventually diagnosed with dynamic tactile allodynia, a type of nerve pain triggered by movement against the skin, she sees the label not as a prophecy for future torment but rather “...a marvelous, beautiful trio of words!” that recognize the anguish she’s already endured. As Sorman writes, Ninon has “...finally been deemed sick and therefore innocent, absolved of all suspicion, what a relief to know you have something rather than nothing.”
Then again, even when suffering is still to come, it rarely helps to pretend it isn’t real. In a recent New York Times essay, Allison Sweet Grant announces that the one lie she would never tell her children is that something painful will not hurt. When Grant was eleven, she explains, she underwent surgery and was told by doctors that nothing would hurt—only to find herself annihilated by pain. “The difference between what I was told and what I experienced shattered my faith in doctors and left me questioning whether I could trust adults at all,” she writes.
As Grant explains, parents often have an understandable urge to assuage their children’s fear by assuring them medical procedures won’t hurt, but studies actually show that children express more fear after receiving this reassurance. After all, nothing a parent says can stop children from actually feeling the pain caused by a procedure; instead, hearing these words from the people meant to protect them leaves children with both a deep sense of betrayal and a weakened ability to handle similarly distressing situations later on.
Grant’s article reminds me of this song, by The Weather Station, “Loss,” which includes a quote from a friend of Tamara Lindeman, the band’s lead singer: “At some point, you have to live as if this truth is true.” I say this to myself all the time now, whenever I catch myself blurring what’s in front of me with useless fictions. As Lindeman explains, the song is about someone realizing that “the pain of trying to avoid the pain is not as bad as the pain itself”—which becomes complicated when this avoidance is carried out by other people.
Even as an adult, I find that I feel safer when people are straight-up about what’s going to happen to my body. In November, I went under anesthesia for the first time, which I’ve long feared because I’ve heard so many horror stories about patients waking up mid-procedure to find atrocities happening to their bodies. Before the test, I asked questions about the procedure to anyone who could tell me: my dad, the Internet, the nurse the morning of the test.
Hearing that I’d stay asleep the whole time did little to alleviate my anxiety, but when I asked the anesthesiologist herself, her response surprised me. Instead of promising me that waking up was impossible, she simply said, “Well, some people go in and out, but they never remember any of it afterwards.”
As I lay on the table and waited for the sterile haze of the exam room to collapse into dark, I realized suddenly that I wasn’t nervous anymore. Instead of reiterating to myself the same lies about my fears being baseless, I assured myself that if I did wake up, whatever terrors I witnessed would be erased by anesthesia. And when I woke up shortly after in a room with a thin curtain drawn around it, I realized I had no way of knowing if this nightmare awakening had occurred, only an unshakable trust in the people who could remember it.
It took me a long time to understand that negative emotions exist for a reason. When I was growing up, there was so much pressure to attend to my mental health, monitor myself for possible emotional suffering, while physical health was treated as old-fashioned and overhyped. I learned that if I felt off in a way I couldn’t put words to, this was a symptom of some inner neuroticism. Chest and abdominal pains were anxiety, not the results of an overactive immune system. The persistent hollowness I felt was not hunger from being unable to eat as much as I needed to—it was depression, both a medical disease and an aesthetic to glamourize and cling to.
Ironically, as much as people claimed you weren’t any more at fault for your mental health than you would be for asthma or epilepsy, the implication always seemed to be that I just needed to stop worrying, and then I would feel better. Just don’t be afraid to eat, doctors said, as if this was an encouragement—never mind that what I feared was not food itself by the sharp, unrelenting pain that came with it.
Not worrying about it didn’t actually mean feeling good. Really, it just meant numbing myself, learning to shut off my awareness of what hurt and what didn’t, to the point where I accidentally burn my wrist on the stove and barely flinch, forgetting that I’m supposed to be startled by pain. It meant being prescribed pills that could help me ignore whatever damage was happening inside my body but would never actually address what needed fixing. It’s astonishing to me that it took years to get a doctor to just do the one biopsy that was needed to identify a problem and only one two-minute appointment where I said I didn’t feel quite right to get not only a Zoloft prescription but also an offer for something quicker to tide me over in the two weeks it would take to kick in.
I can’t understand this obsession with being comfortable even when it means neglecting what’s really wrong. This desire to lie to ourselves, to stifle our alarm systems. If there were a medication that could make me completely oblivious to my physical pain, I would never want to take it. I don’t want to alleviate myself into oblivion: I want to be as upset as I need to be to pursue better.
I think a lot about this line from a Florence & the Machine song, “Light of Love,” about the desire to dampen the weight of reality. At the end of the last verse, Florence repeats the line “I want to look away” before finally declaring, “I must not look away!” I recite this in my head whenever I have the urge to distract myself from what I feel, to muffle my pain without pausing first to look it in the eye.