The Missing Golden Rules: They Don’t Teach You How to Be Chronically Ill In School

Leslie Rott Health Guide
  • I wish that someone would have warned me back when I was an undergraduate, working 100 hours a week at a newspaper internship, and writing a 125-page honors thesis, that it might all catch up to me one day, and a lot sooner than I was expecting. 


    I also wish that someone would have told me that by setting the bar so high for myself, I was doomed to failure if I ever couldn't live up to the expectations I had set for myself.  And I believe that one of the reasons why my graduate school career, at the same school where I completed my undergraduate degree, has been so difficult is because a lot of people had expectations of me that I had created.

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    Everyone was used to this image of me, being the type to go, go, go, do, do, do.  And when I could no longer be that person, even if for health reasons, people looked at me a lot different than they had before. 


    My situation is unique because I became ill in the midst of graduate school.  I hadn't been sick for many years and started an academic program.  I had been healthy, at the top of my game, accepted into a program that was ranked in the top three in my field, and I thought my life was set.  Never once did I consider the fact that my life might have other plans for me than the ones I had for myself.


    To be sure, illness has been character building.  But it has also made me realize, and this comes from someone who truly values education, that some of life's lessons are best learned outside of the classroom.  When I walk away from this experience, in hopefully a little over a year, I will have a Ph. D.  But I will also have something far more valuable.  I'd like to say that I'll have my health intact, but that was precipitously taken away from me without my consent. 


    When I first got sick, I struggled with the expectations of a rigorous academic program, often having to pick sleep over getting work done.  I also had to deal with classes that were at night, when I was least capable of functioning.  And I had to walk myself from my apartment to campus everyday.  Somehow, at this point, I am currently a year ahead of where my program says I should be, and I have absolutely no idea how that happened.  On top of graduate school being a full-time job, so is chronic illness and all that comes with it.


    At many turns, I have questioned what staying in school has done for my health.  I'd be lying if I didn't say that there were many times along the way that I didn't question my decision to stay in school.  But ultimately, when so much of who you are as a person has been built in a certain environment, it's hard to let that go, when everything else in your life suddenly feels so unfamiliar. 


    But there is a deeper problem.  Higher education, in my experience, is not at all equipped to deal with chronically ill students.


    I will say that I was lucky with respect to when my illnesses entered the manifest stage because I have great health insurance through my school, which some days it feels that is only thing that keeps me here.  Had I not been in school, I would not have had health insurance.   


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    My experience attempting to navigate the office for students with disabilities has been at best clueless, and at worst, bordering on discriminatory.  The immediate concern is how I or any other chronically ill student is trying to manipulate the system to our advantage.  This is deplorable!  Time and again, I find myself caught between a rock and hard place.  I'm the least able to fight for myself, and yet, I have to do it all the time.  And the reality is, if I were really trying to buck the system, I would never put in as much work as it actually takes to barely get results.  If I were trying to buck the system, I would have given up by now.


    All I've ever wanted was a contingency plan in place for the potential event that my health took a nose dive; especially considering as a graduate student that my insurance and livelihood are all tied up in my being a student.  And a small amount of empathy and understanding.  Is that too much to ask?  Clearly, it is.


    I am a total type A-er, as it seems are many of the people that end up with illnesses like Lupus and Rheumatoid Arthritis (but that's a topic for another time).  I am still seduced by the long hours of work, slaving away over my computer.  But I can't be like that anymore.  I have to pace myself, give myself time to rest, and ultimately, put my health as the number one priority above family, friends, and especially, above school.


    I have been lucky in that I have made some contacts with some pretty amazing people who are chronically ill themselves, or allies to chronically ill students.  I have, also, however, seen firsthand the problems that ignorance can cause.  I have been told on several occasions that it would be best for me to leave school, or not aspire to an academic career, solely because I am sick.


    But I try hard not to focus on the negative side of things.  This past fall, I earned my Master's degree.  And I am still here, and fighting, and will fight until the day I am pronounced Dr. Rott.  I may not end up being the kind of doctor who fights disease, but I will be an advocate for those who are least able to fight for themselves.  That has been my ultimate goal, all along, even before I entered the world of the chronically ill.        




    I've provided a few sources for further reading, if this is a topic that interests you:

  - This is a unique article about the experience of faculty with invisible disabilities

  - This article focuses on the high school/college experience, but can easily be applied to even higher education

Published On: March 21, 2011