Managing my chronic illness as a graduate student

First, a note about my specific flavor of chronic illness and some disclaimers. I was diagnosed at 24 with endometriosis, a condition tied to my hormonal cycles. In many ways, I was grateful to have a name for my painful cycles, gastric distress, fatigue, and mental cloudiness that I had been telling doctors about for years, which resulted only in various suggestions to relax and eat more yogurt. Because of the nature of the endo beast, I can predict with a fair degree of accuracy when I will have a flare, and there are some medications and lifestyle changes that help me get some of my symptoms under moderate control. I understand that not all chronic illnesses can be predicted, or have their symptoms managed, and so I am sharing what helped me with the full understanding that it might not be a solution for everyone, even those who have my same diagnosis. 

When I have an endo flare, I can sleep for 12-18 hours a day, and have trouble sitting upright at my desk, focusing for any length of time, and often need to stay near the house to manage my digestive system. So I have developed a few strategies for writing (which I imagine as a catch-all for many self-directed tasks that graduate students are tasked with) that help me manage when work is the last thing I want to do. 

  • Preparing for a flare. Because my symptoms are tied to a hormonal cycle, I know (within a day or two) when things are about to take a turn for the worse. Tracking my symptoms in my bullet journal has helped immensely in getting to know the warning signs of a flare, and about how long they last under different conditions. If possible, I don't schedule meetings or appointments during flares, and will move appointments if I can. I also try (as much as I am able) to ride energy waves when I do have them, so that I feel more comfortable taking time "off" when I need to.

  • Setting manageable goals, and actually respecting my limits. My ability to sit at a desk and write, or leave the house to work at a coffeeshop, is different during a flare. A reasonable set of goals for the day - one hour of writing instead of four, focusing on "low hanging fruit" (more on this below) and only doing things that NEED to get done - respects my body's limits, and doesn't set me up for feeling guilty about a long to-do list that didn't get done, but also didn't need to be done today. And when I hit the wall, I don't push through it. I give myself a chance to rest, knowing that I will eventually feel better and can balance out my work when my energy stores are higher. Rest is only restful when you aren't flagellating yourself for not working, so focusing on manageable tasks lists and truly resting when I need to prevents me from over-working and not really resting.

  • Having a list of "low hanging fruit." I keep a running list of work that I can do that takes very little physical and mental energy. It includes: cleaning up entries in my citation library, organizing my digital files, light research on future topics, formatting footnotes, and inserting figures and diagrams. These are all tasks that need to be done eventually, but definitely disrupt the flow of more active writing. On days when my brain is foggy or I'm not feeling up to the full mental and physical exertion of writing, I turn to that list and start working on it. I then feel like the day wasn't wasted, and I can save my better quality work days for tasks that require more focus.

  • Embracing couch/bed/comfy office. I often advise my clients to have a dedicated work space, if possible, for their writing, so that when they enter that space, their body and mind knows it is time to go to work. But, if the work isn't going to happen in real office, I would rather do an hour of work in bed than zero hours of work in my office. When I feel better, I go back to real office, but knowing that more comfortable options are available to me lowers the bar for actually starting my work just enough to make it possible on off days.

  • Thinking about my work on longer timelines. While I understand the commitment to challenges like "writing everyday" or "500 words a day, no matter what," that just is not a reality for my body. It took me months to trust that even if I take a day or two off because my illness demands it, I could still have a productive month. Tracking my work, having smaller goals, and checking in regularly let me prove to myself that I could "afford" to work differently during a flare, and have the resilience to restart my writing routine when I was up to it. I often hear from clients that they're afraid of "losing momentum," but to my mind, writers with good habits know how to restart after time away from the desk, and can see their work away from the "all or nothing" writing mentality.

Working around my chronic illness is an ever-evolving balance of listening to my body and adjusting for the conditions, day to day, and sometimes hour to hour. It helped immensely to learn of others that manage adaptive writing routines and still remain productive scholars. But, showing myself some compassion and learning that not all days have to be perfect writing days in order to make progress has made the biggest difference in a culture where "publish or perish" and the pressure to perform writing for my advisors, and online, seems to be the norm.  


Some thoughts on working in a fast-paced news cycle.

Life with a non-academic partner

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