Nonlinear trajectories

On an academic career with chronic illness

Right after completing my bachelors degree in May 2012, I had my first surgery to diagnose and treat stage 2 endometriosis.  A few months later, I started an intense graduate program.  The next 6 years I struggled with the demands of my body-- digestive problems, chronic and unpredictable pain, fatigue, other conditions yet to be diagnosed--, a desire to train for long-distance races, deteriorating mental health, and damaged relationships, all while trying to finish a dissertation and find a job.  I was in and out of therapy, and on and off different medications, with good and bad side effects.

In 2020, during the first pandemic lockdown in Europe, I had a second surgery for endometriosis in Czechia, where I barely spoke the language and befriended a fellow patient to help me communicate with the nurses.  A year later, I finally got polycystic ovarian syndrome (PCOS) diagnosed, which had inexplicably been overlooked by doctors much of my adult life.  More recently, I got diagnosed with systemic sclerosis (SSc)-- a rare, autoimmune rheumatic disease of unknown etiology.  Right now, my SSc is mild, behaving similarly to the early stages of rheumatoid arthritis.

I've had symptoms of PCOS most of my adult life and of SSc for at least two years before diagnosis.  But I didn't see doctors moving urgently to investigate my symptoms until I had recurrent pregnancy loss (RPL).

Screenshot from The Witcher 3: Wild Hunt, one of my favorite coping mechanisms.

Cumulative reproductive trauma, chronic pain, physical and mental fatigue, researching new diagnoses, regular doctors' appointments in foreign languages, gaslighting, and medication side effects have taken a huge toll on how I and my career have developed.  I burnt out during the pandemic and was unemployed all of 2021.  Since "coming back" to academia, I constantly feel like I am playing catch up.  Surprisingly, I don't often feel imposter syndrome anymore-- the time off gave me enough distance to see the absurdity of how academics are taught to measure their self-worth.  However, I am regularly frustrated with a system that expects a linear progression from one career stage to the next (see, e.g., Germany's WissZeitVG and proposals to reform it), frequent travel, and the inability to say "no" to an incessant onslaught of "things that will look good on your CV".

I've gotten quite good at saying "no", but I am by no means a lazy person.  I work just as hard if not harder than my healthy peers, as my energy stores are generally more limited and intense symptoms can crop up unexpectedly.  I try not to think of myself as a person "suffering from" or "battling" chronic illnesses, and I resent terms like "brave" and "warrior", which imply choice and a caricature of resilience.  I didn't choose any of my diseases; they were, as far as anyone can tell, randomly assigned to me by the universe.  Trying to build a career and reduce symptom intensity through lifestyle changes, diet, exercise, and medical treatment is not bravery-- it's just living, however difficult.  At the same time, I will always struggle to succeed by certain arbitrary metrics, especially the ones with age requirements (which are confusingly still common in academia, despite the median age of PhD completion being above 31 since the 1970s.)

The fact that I am able to work full-time makes me quite lucky, all things considered.  Unemployment rates and absenteeism among those with chronic illness is high; see, e.g., studies on endometriosis and rheumatic disease.  And although we are loath to admit it, very few academics have successful careers through their hard work alone.  We're all privileged in one way or another-- the universe is one big lottery system, where some of us get the skin color, gender, genes, geography, nationality, or whatever trait is preferred, however explicitly or implicitly, by society at a given point in time.  I wish those sitting at the top of the academic pyramids would acknowledge this more and help shape a system that supports more colorful, more interesting, nonlinear trajectories.