Chronic Illness and the Art of Pacing

Juggling full time work along with AU studies and life’s endless responsibilities can be a challenge for many students.  However, for students with chronic illnesses, this busy, fast-paced life can feel utterly overwhelming.

Acknowledging that chronic illness comes in endless varieties, with ever-changing symptoms that can fluctuate in their severity, there are a few lessons that I have personally learned during my post-secondary education journey as a chronically ill student that I believe can be applied to many lived experiences.

One of my most important lessons has been the art of pacing, which can be incredibly frustrating when you are on yet another deadline, with seemingly endless tasks continuing to pile up.  Although it seems counterintuitive, rest, relaxation, and stillness can be incredibly helpful, even as the world continues at a chaotic pace.  Admittedly, for those who have lost an unexpected week, month, or season of productivity in a world not created for us, this can be incredibly frustrating.  However, what is more damaging is the inevitable flare of symptoms that denying the body this very rest inevitably brings.

I am incredibly guilty of overwork without heeding the consequences, because deep down, that small voice, that voice that questions my place in this world and how others perceive my output, has yet to be fully unlearned—to the detriment of my health.  To this day, despite my advocacy for accessibility and accommodations, I still struggle with my own internalized ableism, including asking for accommodations, knowing full well the continued stigma and possibility of lost opportunities.  At the same time, I am fully aware of what end pushing myself past my limits brings.

I am incredibly open about disability and chronic illness, while simultaneously intensely private and vague, since I owe no explanations.  Over the years, I have become more forceful in demanding accommodations and accessibility as my right, although the daily struggle of advocating for yourself can be incredibly exhausting in and of itself, in a body whose daily state of being fluctuates between mild to extreme exhaustion.  It feels like a lifetime of constant fatigue coupled with medical establishment advocacy, a productivity-driven environment, and often, educational institutions that will never truly accommodate, as these systems and intuitions were not built for people like me.

But, somehow, the struggle continues.  With me furiously typing out essays, presentations, and think pieces from bed, from the floor, in tiny pockets of time or on those rarer good days—hoping that this particular burst of energy is not the one to push me back into a flare.  This includes the struggle to finish this degree, with endless peer questioning about how it could possibly be taking so long.

As many AU students know, many of us are working and juggling family commitments, and countless others are caregiving for dependents—in addition to chronic illness, disability, and neurodiversity—and we will take as long as we need to take, not by society’s standards and timelines, but by our own.  In the midst of the most trying days, I remind myself that I exist in crip time.  My life has not been and never will be linear, and that traditional milestones are something that I cannot, should not, and will not abide by.  And sometimes breaking down these barriers happens from those long days in bed.  It happens from endless naps, and it happens a lifetime of reminders of self-empathy, self-acceptance, and pride.