How not to treat yourself when chronic illness strikes

Despite this culture’s obsession with good health, people get sick.

This piece is based on a story I tell in my book.

In 2001, I got sick with what the doctors initially thought was an acute viral infection. I have yet to recover. Diagnosis: Chronic Fatigue Syndrome—a little-understood illness that is as debilitating as its more justly named cousins that also compromise the immune and neurological systems. My case is particularly severe. ­I feel as if I have the flu without the fever—24/7. It is so disabling that I was forced to give up my beloved career as a law professor.

At first, I blamed myself for not recovering, as if it were a failure of will, somehow. In addition, I was embarrassed that I wasn’t the picture of good health. This sometimes led me to hide my condition, often to the detriment of my health because I’d fail to take action to care for myself properly.

These two reactions—blaming ourselves for our health difficulties and hiding them from others—are not surprising, given the barrage of media stories and advertisements telling us that good health is within our control: we need only exercise, eat right, and get enough sleep. This simply isn’t always the case. We’re in bodies, and bodies are subject to illness, injury, and aging despite our best attempts to follow these “prescriptions” for good health.

It took an intense moment of physical and mental suffering for me to finally let go of blaming myself for having become chronically ill and to step out from the shadows and admit that I was sick and needed help.

It happened during the Thanksgiving holiday of 2002. I’d been sick for a year and a half, but was unwilling to accept that I could no longer travel to family gatherings. My husband (also named Tony) and I live in Davis, in northern California. I stubbornly insisted on going to Escondido in southern California where, for years, my daughter-in-law’s parents, Bob and Jacqueline, hosted our whole family for Thanksgiving.

I thought I had done a good job of planning the trip to accommodate my illness. On the Tuesday before Thanksgiving, Tony would make the eight-hour drive from Davis so we’d have a car at our disposal. On Wednesday, I would get a ride to the Sacramento airport and fly to San Diego where Tony would pick me up.

As soon as I got into our car and we began the 45-minute drive to Escondido, I knew the trip had been a mistake. My body was aching with flu-like symptoms; my head was pounding in pain. We checked into our hotel and drove to Bob and Jacqueline’s house. After 10 minutes of visiting, I felt so sick that the room began to spin and I couldn’t focus on people. I told Jacqueline that I needed to lie down.

Except for sleeping at the hotel at night, I spent that day and Thanksgiving on Bob and Jacqueline’s bed. As I lay there, I blamed myself for everything my mind could come up with: undertaking the trip in the first place; taking over someone else’s bedroom (which they graciously offered); not helping with food preparation; embarrassing my family (which was all in my mind—they weren’t embarrassed, just concerned); ruining Tony’s Thanksgiving. The list was long because, as the Buddhist teacher Jack Kornfield likes to say, “The mind has no shame.”

I remember vividly how embarrassed and ashamed I felt as I said goodbye to our hosts on Thursday evening. On Friday, Tony dropped me off at the San Diego airport. The flight was delayed two hours. I propped myself up on a chair in the boarding area, bruising my elbow and spraining my wrist as I dug my elbow into the chair’s wooden armrest so I could use my upright arm and palm as a pillow for my head.

I’d arranged for the Davis Airporter, a mini-van service, to pick me up at the Sacramento airport. When the flight finally arrived, I walked outside the terminal to find that Sacramento was socked in with tule fog—a cold, wet fog that descends on the Central Valley in winter. The van wasn’t there yet, so I sat on my suitcase in the fog. Since getting sick, this was the closest I’d come to collapsing on the ground.

When the van pulled up about 15 minutes later, the driver told me that he had to wait for two other planes to arrive before he could drive to Davis. I got in and lay down on the back seat to wait. The van was unheated and damp inside. Ten minutes. Fifteen minutes. Twenty minutes. My physical suffering was matched only by my mental suffering in the form of the mean-spirited self-talk I was directing at myself.

Then, unexpectedly, in the back seat of that cold, damp van there was a turning in my mind, and my heart opened to my suffering. I realized that I would never speak as unkindly to others as I was speaking to myself. And I knew what I would do if I saw another person looking this sick. So I did it. I sat up, got out of the van, and found the driver.

It was as if I literally and metaphorically stepped out of the fog where, in shame, I’d been hiding my sick state. I explained to the driver that I was chronically ill and asked if he could please call the dispatcher and get permission to take me to Davis. He called, got permission immediately, and drove me home.

That moment in the van marked the beginning of my ability to treat myself with compassion and to be proactive regarding this unexpected turn my life had taken. But the events leading up to that moment are a cautionary tale of how NOT to treat yourself when chronic illness strikes. Don’t wait for a crisis before taking the same care of yourself that you’d take of a loved-one in need.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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