A guest post by a writer who wishes to remain anonymous.
Watching congress begin the process of repealing the Affordable Care Act this week forced me to finally share a detailed narrative about my experience with our health care system. I wrote the piece many months ago, after leaving my last job, to share with job seekers some “lowlights” of managing life with chronic disease while attempting to finish the PhD and then to hold down contingent faculty positions while also maintaining a long-distance relationship. Some of the challenges that I describe are endemic to our health care system and some to higher education. The essay was meant to highlight the intersection of these systems and how it can hurt individuals who lack job security.
Full disclosure: I have never been covered under ACA. However, one does not need to have Obamacare to be affected by it. ACA guarantees important benefits and protections to people with private plans. My friends and family members are covered by Obamacare, Medicare and Medicaid. Moreover, as you will see from my account, I have gone for periods of time without any coverage and have suffered the consequences. I am also intimately familiar with the chaos of dealing with our insurance systems and, while whole-heartedly supporting a single-payer system, can confidently say that poorly managed and expensive coverage plans are better than no plans.
In my third year of graduate school I was diagnosed with Lupus. Like others who discovered they had a chronic illness during their graduate studies, I had to learn how to navigate my academic career and my healthcare. I was still in the writing phase of my dissertation when my partner, also an academic, accepted a full-time lecturer position in another location. Because we were in a committed relationship and I was familiar with the area, I decided to move with him. The relocation required me to take a leave of absence from my university, which also meant that I had to pay for my insurance plan out of pocket and be subject to out-of-network fees. Moreover, I could only keep the plan for a short period of time. We looked into getting a local plan or coverage through his university. This was before Obamacare. The former option was unaffordable because I had a pre-existing condition. The latter option was unavailable to us because we were not legally married. As a result, I let my coverage lapse. I just stopped seeing doctors and started to ration my medications.
My partner and I were so focused on establishing our academic careers that my, and his, health stopped being a priority. After MLA interviews, I experienced a flare. At first, I ignored it because I thought that I was simply “run down” by the job search. Soon enough I began to have trouble breathing and ended up in the emergency room without health insurance. It turned out that I had inflammation in my lungs. I spent much of my visit crying because I feared not for my well-being but future medical bills and the impact of the flare on my dissertation writing schedule. Fortunately, I went to a county hospital and was able to receive retroactive health coverage available to the local low-income population. To avoid using the ER as health care in the future, my partner and I decided to get married, despite our criticisms of marriage and the connection between marriage, employment and benefits. Our marriage very quickly became a long-distance marriage.
While I was still recovering from my flare I accepted a VAP position at a university in the Midwest. This was my first job and I was happy to have secured employment just before defending my dissertation. I was also excited about exploring a different part of the country while making the transition from graduate student to faculty member. I was still experiencing symptoms and my blood-work caused my doctors concern. However, I was determined to make the cross-country move in hopes that my position would lead to permanent employment. Very soon after my arrival in the new city, I learned that there was no hope of my position becoming tenure-track. In fact, during my second year of the position, the system to which the university belonged would lose tenure altogether. But, at that moment, I had no knowledge of this and simply focused on being “discreet” and “appropriate.” I was also profoundly influenced by the “keep your cards close to your chest” mentality of the job market. This is what I told myself: “Don’t tell them about your partner. Certainly don’t tell them about your disease. Basically, don’t show that you are a human being living in a capitalist economy where health care is big business and disability = incompetence. Not until you get that tenure-track offer in hand, maybe not even until you get tenure.”
During my two years in the Midwest I made a lot of good friends. Only a few of those people know that I was struggling with health problems almost the entire time that I was there. Why did I reveal my condition to some of them? Because on a couple of occasions I needed practical assistance with my health care, such as transportation to the ER or doctors’ appointments. Otherwise, the secrecy quietly ate away at me, but I still saw it as completely normal. The fact that I did not tell the majority of my friends speaks to some aspects of academic culture that I had internalized. As a junior scholar and contingent faculty member, I felt that my problems were not as important as those of my senior colleagues. The most important problems in academia have to do with research, money and politics. My senior colleagues were already burdened with these problems; I saw them as being stretched thin by their commitments to the university and the field as well as their own challenges of balancing work and life, which for some also included long-distance relationships. Disclosing to these overworked people my health issues, which I wrongfully saw as being deeply personal and not systemic, seemed unprofessional. And, of course, I didn’t want them to see me as a liability or wonder if I was doing my job adequately. In hindsight, I see this as an uncharitable view of my colleagues. But at the time I did not expect the kindness that they would show me. Those who learned of my illness offered to bring me food and go with me to my appointments. A senior colleague fought hard on more than one occasion to extend my position, not knowing anything about my health-related hardships.
Here comes the truly messed up aspect of my attitude during my two VAP positions. A part of me thought that I deserved what was happening to me, drawing illogical connections between what I perceived to be my physical weakness and my weakness as a scholar. Yes, my disease made it harder for me to be a good academic, but wasn’t it also the case that if I had been a better academic, I would not be in the awful position of dealing with disease as a contingent faculty member? If I had finished the top program in my field, published more, networked better, I would be in a tenure-track job, with a lighter teaching load, more job security and a sense of being of value to an institution. This was a vicious cycle that always led to self-blame. Most universities say that community is one of their core values. However, this value is often seriously compromised by academia’s pressure on the faculty to be productive. We, especially in the humanities, where collaboration is discouraged, are supposed to be self-directed and self-reliant; our able-bodiedness is assumed. As a result, we get to take sole credit for our successes or our failures at being cutting-edge or prolific. Managing my chronic illness while teaching 5 days per week made it very difficult for me to maintain a productive research program. But this was my disease, my problem, my fault. At least that’s how I saw things.
In addition to the emotional worries, I dealt with the practical disadvantages that come with temporary employment and long-distance relationships. When I first arrived in the Midwest I found myself once again without health insurance, though thankfully for a limited period of time. The insurance provided by the university kicked in after the start of classes. However, I had to come to town well before that to move into my new apartment and get to know my new workplace. After the insurance became active, I still had no idea how to use it. I was new to the PPO system and had no actual information about my plan (not even my ID number) for about a month because the university took so long to process the benefits of new and contingent faculty. A month doesn’t sound like long, but with a chronic illness, it can be damaging. That’s how I ended up in the emergency room without proof of insurance or knowledge about whether the hospital was in my network.
One of the difficulties of having a chronic illness and changing jobs and locations is “starting up” – finding new doctors, locating the nearest urgent care and ER facility, learning about the insurance plan, transferring medical records. Because I was in a long-distance relationship, I had the added hardship of working in one part of the country and then spending summer and winter breaks in a different part of the country. For winter breaks, when I actually had a flexible schedule, I avoided going to the doctor to avoid out-of-network fees. For summers, I would transfer to my partner’s insurance. We did this several times. I had doctors back home and in the Midwest and they did not communicate effectively. When one would fax over medical records, the other wouldn’t receive them. Somehow this happened almost every time.
I was exhausted and demoralized by the end of my two years in the Midwest – exhausted because I developed another chronic condition that I could not successfully manage, and demoralized because I saw the university’s tenure system come under attack from its government. I desperately wanted to return home, but I didn’t. Instead, I accepted another visiting position. This was not an easy decision. I spent a full week thinking it over, consulting with my partner and doing a lot of crying. Why did I accept this position? My contract in the Midwest could no longer be renewed and I was terrified of not having a salary and being out of academia. I also did not yet have a diagnosis for my new condition, only a set of symptoms that I hoped would go away.
VAP job #2 created even more distance between me, my partner, my family and my dog. This time, I would move to the East Coast to start work at a small liberal arts college. I approached my new job once again determined to be stoic about my “personal struggles.” Once again I had a delusional sense of stakes about my professional future. Maybe this time, I would find myself in a position that would turn tenure-track. I better not risk the opportunity by showing my weakness. But soon my biggest desire would be to go home and curl into a ball in a quiet corner. A few factors contributed to this situation. I was having a difficult time managing my new gastrointestinal illness, which required a diet (low fat and low fiber, which…good luck with that…). I did not have a car, which made grocery shopping complicated in a pedestrian-unfriendly environment, and I simply did not make eating appropriately a priority. My priority was once again: ACADEMIA, so I did not take care of myself, and suffered, and felt guilty about not taking care of myself.
Then, shortly after my arrival, I became plagued by a completely unexpected problem. I received countless medical bills for treatments that I had undergone during my previous job. I had left the Midwest, but the Midwest wouldn’t leave me. Somehow the insurance company decided that I had other coverage during the time of these services (I did not) and retroactively denied their responsibility. I found myself trapped in a Kafkaesque nightmare of letters and phone-calls. The whole thing was a misunderstanding but it took me the length of an academic year to prove that the insurance company was in the wrong. In the meantime, I struggled to take care of my new health problem and “start up” with my new insurance plan in a new place. This plan had its own rules about what it would and would not cover and I found myself simultaneously making phone-calls to this insurance company in the hopes of understanding why one blood test was not approved while all of the other blood tests on the same standard Lupus panel were. The battle continued after I left the East Coast, when I had to deal with the company’s decision to retroactively deny me coverage for a medical procedure I underwent during my first week of classes. Just like the Midwest wouldn’t leave me on the East Coast, the East Coast won’t leave me in on the West Coast (where I currently reside). However, at the time, I was mostly disappointed to realize that my new plan had a deductible and that, in fact, I needed to pay two deductibles (actually 4; there were separate deductibles for treatment and drugs), because the academic year does not line up with the insurance company’s (standard) calendar year. This is another way in which 1-year faculty members are at a disadvantage.
My Lupus was under control but the medical bills and gastrointestinal problems rattled me on a daily basis. My partner and I were teaching five days per week and, as a result, went months without seeing each other. I also had a hard time forming a support network at the college, in part, because it was much smaller than my previous institution. I feared that opening up to people would lead to rumors and that my colleagues wouldn’t trust me to do my job. The truth of the matter was that the people who learned of my condition were extremely supportive. A couple of my colleagues became true friends to whom I could open up without fear of judgement. They also gave me practical and emotional support and bettered my life by infusing it with some lightness and humor. Still I couldn’t shake my sense of isolation and vulnerability. I stopped trusting myself to “show up” to social events and to my job, even as I successfully (I think) kept up the appearance of wellbeing. I began to have panic attacks before and while teaching. I also, for the first time in my life, experienced what would soon be diagnosed as major depressive disorder. I didn’t think that I would last the year. In fact, I seriously considered quitting after the fall, but did not go through with it. Instead I began to see a therapist, for the first time since joining academia, and learned some coping strategies for my physical and psychological symptoms. Also, in the spring, one of my courses was canceled. Normally I would be distressed about this. But this time, I was thankful. With a lighter teaching load, I had more time for my doctor’s appointments, my research and even a little time for rest. And, of course, the knowledge that I would get to return to the West Coast helped me see the finish line.
My position was renewed and I was offered the opportunity to continue, but, for the first time in my life, I turned down a job. Despite all of the above, this was an extremely difficult decision, which entailed the risk of never teaching again. To reiterate, a certain degree of privilege allowed me to make this decision. I had a supportive partner, a place to return to, prospects of alt-ac employment and access to health insurance through my partner’s employer. If my partner were to lose his position now or if we were to separate, I would once again be without health insurance. So long as this country ties coverage to employment it continues to treat healthcare as a privilege and not a human right. ACA is broken system that needs to be fixed, not repealed. It may not be the safety net that we want, but it’s one that we desperately need at this moment.