When The Other Shoe Drops

When someone has a chronic illness, they live with a constant shadow. They may have been diagnosed in a storm of crisis, one that plunges them into an acute medical system, elevates stress, causes insomnia, makes them overwhelmed and short-tempered, and pushes them to the brink of exhaustion. A chronic illness is a full-time job of appointments, medication schedules, self-care, and persistent self-doubt that makes them reflect on whether they are doing a good enough job to keep themself alive.

I often describe the diagnostic phase of breast cancer as being steamrolled into the Breast Cancer Industrial Complex, a soul-less factory of standard of care medicine that is definitely not patient-centered. It is often up to the woman to find the additional emotional, social, nutritional, and lifestyle support that she needs. She has to manage it all, make hard decisions, accept things she would otherwise refuse, and figure out who is going to be on her team. This makes a chronic illness a full-time job with overtime.

These initial experiences can leave an indelible impression on her, an impression that makes that constant specter, that fearsome shadow of trauma, reside in the back of her head all the time. It forces her to bargain with the Universe, to think her way magically to health. Magical thinking creates a time warp of expectations and makes settlement with neutrality commonplace. Day to day, if things just don’t get worse, the other shoe won’t drop.

Those of you who pay attention to my social media might remember some videos I was encouraged to create a couple years ago. They were hard for me to produce because I was sharing my own struggle with chronic illness—not cancer, rather lupus—and these are stories I don’t like telling. They show my vulnerability, my health challenges, my yearnings. In short, they make me feel exposed. However, I’ve always believed that my own chronic illness experiences have helped shape my medical world-view, and given me a range of insight into how it must be for my patients diagnosed with cancer. In short, it helps me empathize and be compassionate.

I’ve spent the last thirty years living in the midst of the magical thinking that makes me a unicorn: successful treatment for dire kidney disease at age 26, but with a few long-term ramifications. I was lucky: I went through a decade of not even visiting a rheumatology clinic because I thought I was done. I moved on with my adult life, my career, and all the family stressors I’ve dealt with in recent years thinking I was scot-free. But then in July the other shoe dropped: my kidneys are not working as well as they should. For a while this summer, I was experiencing my own specter, my own doubts that I could live healthily, that I could proceed with my life plans, and not be tethered to labs, procedures, and treatments. All of a sudden, my magical thinking of "being done" came to a screeching halt. All along a part of me had just been waiting for it.

After weeks of being on the appointment and wait roller coaster, I had better news than I imagined: my test results show less serious causes for the changes. There was still a shoe kick to my life, though, because I can’t ignore my kidneys any longer. 

I have recognized several things: I need to put the oxygen mask on myself first, i.e., pay attention to my own health needs when they arise and not put them off in favor of only taking care of others; I have to recommit to the variety of healthy habits that kept me stable and well for so many years (i.e., diet and exercise); and most of all, reduce stress (i.e., boundaries are self care).

The reminder that my own life is precarious helps me have the grace to prioritize my health the way I prioritize caring for other people's health. This is the heart of self-compassion: talk to yourself the way you would talk to a friend. Please be gentle with yourself and others going through medical challenges: the struggle is so real.