Sarah Zarrow is a PhD student in Hebrew & Judaic Studies and History (full biography at the end). In this two-part series, Sarah describes her six-year-long struggle to find proper health care for a mysterious, chronic condition that followed stress and tragedy in her life. In this first post, her painful story highlights the inadequacies of university health services (at least for graduate students), and lack of concerns graduate programs hold for students’ well-being. Also, check out Part II!
Graduate Student Stereotypes And Barriers To Proper Health Care — A 6-Year Health Mystery
This is not a story about dating in academia, though it begins as one. I first met Kyle after he was released from police custody after being arrested for participating in a student-led action. I was immediately drawn to the way he didn’t seem to care about what anyone else thought, his anarchic style. As we got to know each other, this impression was only confirmed. He was clearly an oddball, and I loved that. But as our relationship progressed, I wondered if his “nutty professor” persona (which others named, as well) was perhaps not serving Kyle well. He could be moody and mean, and demanded that I fit myself into his life, and not ask for anything. He was difficult, but on the other hand, he was clearly brilliant. After all, who was I to know what it was like to write a dissertation, to be under that constant pressure?
Kyle eventually broke up with me, claiming that I was an impossible person to love. After months of bad treatment, the relationship was over, and the grief mixed with a sense that a burden had lifted. But our breakup occurred just days before my second-year qualifying exams, as well as a large rainstorm that sent wet chunks of ceiling raining down onto my computer. My landlady fixed my ceiling. I took my exams through tears, and passed out immediately afterwards, exhausted from the stresses piled on top of each other.
A few days later, I woke up in the middle of the night, feeling woozy and feverish. I chalked it up to some bad food, and perhaps to the combination of stress and coffee. I got up and walked across my room in the direction of the bathroom. I washed my face but didn’t feel better; as I opened the door to my room to head back to bed, I must have fainted. I came to on my floor with my roommate beside me. We figured it was some odd stomach illness, and she took care of me for the next few days. The approaching summer and my research trip abroad helped me perk up a bit, and I headed to Poland to conduct research and improve my language skills.
A String Of Doctors
When I returned in the fall, I was feeling much better. My anxiety had lifted, and I hadn’t fainted again. But my health adventures were only beginning. Still suspecting that my incident in the spring was a sign of something larger, I headed to various doctors at the Student Health Center (SHC). By my retrospective count, I saw seven different doctors. Not all specialties exist within the SHC, and some appointments and tests necessitated outside doctors. After receiving multiple large bills and arguing with my insurance, I realized that I was being referred not only out of the building, but out of network. By then, I had racked up a few hundred dollars in medical charges. I took on some extra teaching and tutoring to pay them off. No diagnosis was ever made. I was referred to a neurologist. Then to a cardiologist. Then to another neurologist. At one point, my primary care physician found an abnormally high cortisol level. But, she demurred, graduate students were all stressed out, and clinically high was “actually” normal. I was given anti-anxiety medication, which has certainly helped many people, but which I now suspect might have masked my underlying problem.
Eventually, I stopped seeing doctors, as no one seemed able to tell me if I even had a “real” problem. More than a few doctors implied that my pains and fatigue, as well as the fainting, were “all in my head.” After all—I was a stressed-out graduate student, yet living, supposedly, a life of leisure, sitting at home and thinking and writing all day. At least this is how some of my professors, without ever asking us, described the graduate student life. Doctors might as well have said “hypochondriac” or “hysterical.” I was relieved on the occasions when I had a concrete, diagnosable injury or illness. I was thrilled when an X-ray revealed that my shoulder pain wasn’t a wandering womb or a sign of inanity, but rather a fracture. I began to identify as a sick person, reliant on others for care and treatment, despite knowing that I was actually quite resilient and capable.
I focused instead on my mental health, and on small things that made me happy. I dated again, I began dancing, I began to believe that Kyle had been wrong, and that I had accepted his judgment of me because he was smarter (as he had told me), and because I had chalked up his quirks to typical oddball nutty professor behavior. After we split up, and he was subsequently kicked out of graduate school and devoted himself to working on his “manifesto” (his term, only half-joking, for his dissertation), I began to see that the problems in our relationship were perhaps not mine alone, and that he was truly suffering. But being so burned out from the experience of being together and breaking up, I chose to withdraw from most contact with him, rather than further engage and risk being hurt more.
Loss And Reactions
The year went on, and I began to prepare for my comprehensive exams. I came home from school one day, sat down at my computer, and was interrupted by a call from my roommate. Zach told me that Kyle’s house was on fire, and that it looked like Kyle had set it; he was currently in the hospital with severe burns. The next few hours and days went by in a blur of hospital waiting rooms, calls to family, and trying to remember to do things like shower and eat. As for work, I thought that I triaged well. I somehow graded exams, returned library books that were due, and let my professors and supervisors know what was going on. I kept my notes short, as I preferred correspondence from my own students—personal emergency, friend in the ICU, will be delayed with all work. In short, I think I handled the situation well from a professional standpoint. Eventually, Kyle succumbed to his injuries, and died after four days in a coma.
Colleagues’ and professors’ reactions ranged from sympathetic to cruel, and it is only in retrospect that I can see the cruel ones as part of a larger problem. My advisor, with whom I enjoy a friendly but not warm relationship, was the only faculty member I encountered whose reaction didn’t leave me reeling. I went to meet with him, and he simply told me, after a brief inquiry into my own health and a reminder to avail myself of counseling services if necessary, to take the time I needed. I told him I would reschedule my exams, and I did. We never spoke of it again, though I’m certain I could have approached him for a chat had I wanted to.
The professor for whom I was grading, when I went to talk to him, told me “Well, Kyle was a very troubled young man.” As if that was a good explanation, one that would encourage me not to dwell on the matter. A fellow Ph.D. student, when I told him what had happened, tried to console me with the thought that “at least you have a lot of work to get you through it.”
By far, the most painful response was from a professor whom I thought would be my ally, as I knew that she had faced her share of travails in the academy. I was taking a course with her at the time, and I emailed her to let her know what had happened – that I would not be in class that week, and would hopefully return the next. She emailed back to tell me that we needed to meet, specifically to discuss my course participation. I asked if we might postpone the meeting, or at least meet on a day when I would already be in the city. In no uncertain terms, she let me know that I would need to meet her near her house, over an hour commute for me. Over coffee, after hearing a brief version of what I was going through, she proceeded to tell me all about the problems her son had been facing, and how it was so difficult to deal with young men. I was floored as I realized that I had become her sounding board, and even more shocked as I realized that she considered this an act of empathy.
After that meeting, I chose not to talk about my experience with anyone in the academy. I was lucky that I had support from outside of it: my friends and family, and a great therapist. I decided not to investigate whether I was allowed to talk time off for bereavement or sickness; as I was only serving as a grader that term, I could manage my workload. The acute emotional pain dulled, and I was able to take and pass my exams, and to finish most of my incompletes by the middle of the summer, putting me “behind” (whatever that means in graduate school) by only a few months.
The Cost Of Finding Proper Care
Though I began to feel better mentally, more like myself, my physical health started to take some mysterious turns for the worse. I spent that June in Vienna for research, sharing a lovely apartment and comforting myself with small archives and a peaceful, easy city. My last night there, I woke up suddenly in the middle of the night. I was disoriented and flushed. I knew that I needed to get out of my loft bed immediately. Thinking that perhaps I had food poisoning, I climbed down the ladder and tried to make my way into the hall. All I remember next is my roommate cradling my head, as I lay on the floor, my face throbbing. I had fallen and hit my head, given myself a black eye, and put my tooth through my lip. It is only recently that I realized that I could have died, not from hitting my head, but from what caused it.
But figuring out the cause would now take on the feeling of a second job. Had I stayed in Vienna, I would have seen a doctor, but my research brought me next to a city known more for bureaucracy, bribery, and spurious “cures” than for good health care. So, I figured that I would take my chances and see a doctor once I came home. When that time came, I was again feeling much better, except for my mouth, which was still throbbing. Our health insurance doesn’t cover dental care, though, so I put off seeing anyone about it. I didn’t need a root canal, luckily, which would have cost about 1,000 dollars – money that I didn’t have. But, that money nevertheless ended up going to cover my hospital expenses when another doctor was concerned that I had epilepsy. During my four days of constant monitoring, I graded exams, and didn’t tell my professors where I was. I wasn’t sick, I felt fine, and I was starting to feel as though I might have exhausted the goodwill that had been extended to me. We all know a person with so many problems that we wonder whether they bring it on themselves. I didn’t want to be that person.
In the end, it took three more years to find a doctor who listened, and a diagnoses (and treatment) that made sense. My health’s ups and downs, and the care they sometimes required, strained many relationships, and broke one. Luckily, at an unexpected moment, a new doctor thought to repeat some tests that I had years ago, including the one that prompted my PCP to say that “all graduate students are stressed.” My levels were so far off that it was now almost obvious what had been happening to me.
I had planned to graduate in December of this year, but my extensions and emergencies made that impossible. May graduation deadlines loom, and I’m determined to walk this spring. But graduating will also mean losing my healthcare, and purchasing a cheaper plan for myself, so I have been trying to find as many answers as possible in the time that remains.
When I went back to the SHC to try to transfer my care there, and my files from my out-of-network doctor, I was met with condescension and suspicion. I had been fainting? Perhaps I was stressed out and should take Xanax. I had been dizzy? Had I spoken to a therapist? Perhaps I was experiencing symptoms of psychosis. Was I stressed? I confirmed that I felt some stress, trying to finish my dissertation, and that the past few years had been stressful for me. “Right,” the doctor said, “but, basically, grad student stuff, right?” She continued typing, not meeting my eye. Knowing that I would likely not see her again, I decided to say what was on my mind. “I’m stressed,” I said, “because I am 33 years old, with 33,000 dollars in debt, and am facing not having a job next year. My former boyfriend killed himself, my roommate died, and I have been falling down and getting concussions. I don’t know if that’s ‘normal’ for a graduate student, and I don’t care. I came here to try to take care of my health, not to get a lecture in the wonders of Xanax.” She met my eye for the first time in our appointment. “Oh,” she said softly, and I had some hope that she might stop typing. “Oh, that must be hard. Have you seen counseling services?”
For many people with some mysterious or chronic condition, going to doctor after doctor in order to find the culprit for their health problems is just part of the process of getting proper treatment. It’s not news that our healthcare system is set up to discourage good primary care and treating the patient, and her body, as a whole system, rather than as a series of parts—a heart, a brain, a nervous system. Getting proper care becomes a job in itself, and “overuse” of the system draws suspicion. Student medical services designed for 18-22 year olds do not serve many graduate students well (they probably don’t serve undergrads well, either), as I also know from my fellow students’ stories.
But beyond the issues common within our American system, and beyond bad and overworked doctors, who exist everywhere, are a set of assumptions about graduate students that seem to do us more harm than good. And there are associated stigmas: not working enough (sometimes known as taking care of your health) means you’re lazy, and not serious enough of a scholar. Going to “a lot” of doctors (especially if you’re a woman, it seems), carries another stigma—that of hysteria and hypochondria. Of course, most people told me to take care of my health first. But there often seemed to be a footnote to that, which read “only if it doesn’t interfere with your timeline, your due dates, and only if it doesn’t inconvenience me.”
It is these stigmas, which go far beyond the academy, combined with stereotypes about graduate students, which together serve as barriers to proper care. When health professionals do not see graduate students as individuals, and as people in distress, but rather as collections of oddball tendencies and stress, proper diagnosis and treatment are impossible.
Sarah Zarrow will receive her Ph.D this spring from the joint program of the Skirball Department of Hebrew & Judaic Studies and the History Department. She concentrates on modern European Jewish history, with a particular focus on Jews in Eastern and Central Europe and on cultural and linguistic practices. She also holds an MA in education. Sarah has taught at NYU and Eugene Lang College/The New School, and is at work on many digital projects. She can be found online at sarahellenzarrow.com.