Finding My Niche Despite Chronic Illness

Purple blue leaves grow from a niche between a grey concrete sidewalk and a beige wall

A few weeks into my first year as a Sociology PhD student, I started to notice intense pain after working out. I don’t know exactly when things changed, but I soon realized that I was in pain all the time.

With the pain came stiffness in my joints, mobility issues and generally feeling unwell, like I was always coming down with something. It seemed that the more time that passed, the more symptoms cropped up.

So began what my first doctor called the “fishing expedition”. Lab tests results were coming back abnormal all over the place, but no one could figure out why.

It was a difficult time for me. I couldn’t share what I was going through with my fellow students, not even with those I considered to be friends. Although I was somehow managing to keep up with my school work, I couldn’t say that I was going home and napping for several hours every day or that alongside school I was having multiple medical appointments of several hours each, every week. I hid bruises from lab work and procedures, and covertly took my medications when I needed them.

Not having anyone to turn to while also feeling like I had to hide what was going on was an incredibly isolating experience.

It wasn’t until the end of my first year of graduate school that I received an official diagnosis: lupus and rheumatoid arthritis.

As my friends celebrated the end of our first year of graduate school, I went to the hospital for three very long days of infusion therapy. That stark contrast pretty much sums up my graduate school experience.

I felt completely and utterly alone. It wasn’t until I started searching the Internet that I found a community online. Most of the people I met were young and chronically ill, but very few were in college or graduate school like me. Even though I didn’t really know what a blog was, I started one. It allowed me to connect with others even if it wasn’t face-to-face.

I felt that the default response from the academy was one of distrust. I sensed the implicit suspicion that I, and others like me, were trying to buck the system. There aren’t many people I know who are hard up enough to fake a chronic illness to get a little bit of help, but that was the attitude. It made being in a situation that I didn’t ask for and never expected to be in so much harder.

I met the academy’s default response with my own: clam up. But as time went on, I realized that the scope of the problem was beyond me, and that the issues I was having were not a result of my personal failings, but of an academy that expects nothing less than a person’s absolute best. If you can’t hack it for whatever reason, you shouldn’t be here.

I tried to become as involved as I could as a chronically ill graduate student. I made friends with three amazing women, each with their own health issues. I really have to credit them with helping get me through. Without them, I’m not really sure I would have been able to finish my PhD. I can’t imagine what others go through who don’t have any support.

Faculty members who I confided in were often unsympathetic, telling me that I should quit school, or that I would be a more empathetic Sociologist as a result of my illnesses.

I had done my undergraduate work at the same school and so had already built relationships with some of the faculty. It was clear to me that they were reacting to my newly-developed illnesses, not the person that I was before I got sick. This made everything worse. None of my previous achievements mattered. All that mattered now was that no one could imagine me measuring up to the person I needed to be for success in graduate school just because I was now chronically ill.

With an unpredictable condition, I begged for someone to help me create some sort of contingency plan in order to plan for the worst. I was concerned about what might happen if I had to take a leave of absence, given that my livelihood and insurance were tied to being a student and my parents didn’t have health insurance that I could fall back on. No one would. Neither program administrators in my department nor high-level officials in disability services or student services would satisfy my need for a contingency plan.

I registered with the student disability office, an effort that proved to be futile at best. I knew that if I ever expected to get any help – should I need it – I needed to be registered with the disability services office, and that’s what I did. I’m probably preaching to the choir here, but the reality is that for chronically ill students, the only real place on campus for help is the disability services office. There are several issues here:

    1) Many chronically ill students do not view themselves as disabled.
    2) Disability services offices are notoriously underfunded and understaffed.
    3) Disability services offices are not equipped to deal with chronically ill students whose accommodations may change depending on illness severity and other issues, as opposed to many hearing- and vision-impaired students who often require the same accommodations term after term.

But the biggest thing that the disability services office failed to combat was the negative attitudes around chronically ill and disabled students in higher education, certainly within my institution.

While teaching, I met undergraduate students who were chronically ill and totally lost as a result of the lack of institutional support. These were the students that I connected with the most, and I did my best to help them through not only the institution’s processes but also their illnesses.

Plenty of people wanted me to quit, including professors in my program and my rheumatologist. I didn’t quit, despite enduring multiple hospitalizations as well as draining and difficult medication regimens, all while having to act as happy as possible, all while receiving little to no support on the academic side. I was determined to prove everyone wrong, even though any tiny glitch in my health situation could have made finishing impossible.

As time went on, I realized that a career as an academic Sociologist wasn’t right for me. There are a lot of reasons, but my illnesses certainly played into that decision.

The problematic academic climate I faced meant I knew I had to keep those feelings and my future plans to myself for fear that my committee would make it impossible for me to finish my PhD. I genuinely wanted to experience the dissertation process and complete, whatever my subsequent plans.

Throughout my years in my PhD program, I often found myself wondering if I would feel more fulfilled by adding either a Master’s degree in Social Work or a Master’s degree in Public Health to the mix. But neither of those options ever felt like the right fit; I only wanted to do more schooling if a program really felt right.

I happened to stumble upon the Health Advocacy Master’s program at Sarah Lawrence College. I was super excited because it was exactly what I had been talking about for years but hadn’t been able to find. I applied to the program, and was accepted. So I finished my PhD in August of 2013 and began the Sarah Lawrence Master’s program in September of 2013.

When I started my PhD program – when I was diagnosed with lupus and rheumatoid arthritis six years ago – I never could have imagined that I would end up moving from Michigan (where I’d lived my whole life) to New York, embarking on a career change before my career really even started.

I kept seeing chronically ill students in the academy facing the same things over and over again. I saw the need for systemic change. I knew I couldn’t stay silent about it. I knew that I needed to be a part of the process. That’s why I want to work with chronically ill students in higher education: to give them the support and encouragement that they need and which is currently lacking.

Once, while discussing hypotheticals with the chair of my PhD committee, I was told that if I went back to do a Master’s degree after a PhD it would be considered a backwards step. This hasn’t been true for me. It has made the most sense in the world. I have finally, truly found my niche, where I am supposed to be. And I got here totally on my own terms. I know I belong, and will thrive, in the world of higher education, just in a different way than I originally imagined.

Leslie Rott has a PhD in Sociology from the University of Michigan. She is currently working on a Master’s degree in Health Advocacy at Sarah Lawrence College. She is the author of the blog http://gettingclosertomyself.blogspot.com/.

Image: ‘Opportunists’ by readerwalker.  Licensed under Creative Commons BY-NC-SA 2.0.

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4 responses to “Finding My Niche Despite Chronic Illness

  1. I received the same diagnosis (lupus/RA/ankylosing spondylitis) after being more than normally sore after workouts, and then deteriorating rapidly. I was on the tenure-track, and pursuing my EdD at the same time. My EdD faculty were phenomenal about things like moving deadlines due to prolonged hospital stays, and being generally kind and supportive. They, more than my work colleagues, gave me the courage to ask for what I needed. (I am currently writing up the last 2 chapters of the dissertation and hope to walk in Dec ’14). Now, when I am sick, I say so and I stay home to rest/sleep/cringe/medicate. Not-resting, I’ve learned, doesn’t earn me any respect from people who don’t understand the chronic illness, and it just puts me into a steep health decline spiral, which is not fair to myself, my body, or my husband, who is crazy supportive.

    Which is all to say, good on you. Congratulations on finding your passion, for finishing a grueling academic training, and for maintaining your humanity and sanity both.

  2. Thank you for writing this blog. Ironically, I am only now finding it – 2 years after finishing my PhD. I also got very sick by the end of my first year.

    “As my friends celebrated the end of our first year of graduate school, I went to the hospital for three very long days of infusion therapy. That stark contrast pretty much sums up my graduate school experience.” <—– yes! I even struggled with jealousy because most of my cohort seemed to really love their phd experience while mine was a struggle.

    I also sometimes wonder if the phd is the tipping point that pushes us from functionally healthy to sick.

  3. I have the same diagnosis – changed only this year to MCTD. I found studying for my masters was enough and always feel a little like I have let myself down not going to full way to a PHD. I will do one day! Inspiring story…maybe I should look to get back into education!

  4. Reblogged this on Tea and Narrative Empathy and commented:
    Reading this was exactly what I needed right now. I am currently on this very diagnostic path, with lupus strongly suspected by my doctors. Whatever the diagnosis and outcome is, I’m so happy to have a fantastic supervisor who is understanding and supportive of my current state of more-than-normal sleepiness, chronic pain, and for the fact that she is one of the few people in this place who NEVER asks me “why are you limping again?” when she sees me… I really am getting sick of that question, because for now I cannot answer it!

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