On Learning to Live with Chronic Illness

A life-long journey

September is back-to-school month, and I begin a new class this week. I read my assigned reading intently this weekend, highlighter in hand. I like learning about the art and science of psychotherapy, and I’m excited to be part of a community of learners.

Not everyone likes school, but everyone likes learning something. Some people enjoy learning cooking or painting or sports or video games or bird watching. Other people enjoy learning to garden, to drive fast cars, to tell jokes, or to care for animals.

We are wired to learn. Infants turn their heads to light and sound. Toddlers practice crawling until one day they stand, wobbling, on two feet. Children form letters into words, and then into sentences. Teenagers learn how to drive, progressing from halting maneuvers around an empty parking lot to seamless merges onto the highway.

We learn throughout our lives, taking in new information and adjusting to it, developing and refining skills along the way. Thinking of ourselves as perpetual learners is a useful stance, including as it relates to living with chronic illness.

Diagnosis

When we’re first diagnosed with illness (including the time period leading up to diagnosis), we are noticing symptoms outside of our norm. Perhaps at first, we ignore these symptoms; perhaps we unconsciously try to work around them. Eventually, though, we face them and we try to learn everything we can about them. We notice how and when we are experiencing them, and factors that improve or worsen them. We read about our illness in an attempt to learn how experts understand what is happening to us. We gather information anecdotally from people similarly affected. We cultivate a community, including our medical care team and our trusted loved ones, to support us as we take in all of this new information.

We use trial and error to discover what helps and hinders us. We may keep a food diary to see which foods exacerbate symptoms. We try different medications, noting the effects each one has. We learn how much movement is beneficial, how much rest is optimal, and all kinds of little tricks and work-arounds that improve the quality of our lives.

Settling in for the Long Ride

Many of us had a belief when we first were diagnosed that living with chronic illness would be like learning to ride a bike. We’d wobble at first, but then we’d figure it out. Once we did all the trial-and- error work of adjusting how we lived, we’d crack the code and could live the rest of our life on autopilot - much like we hop on a bike and just pedal, without giving it much thought. Chances are, if you’re reading this, this has not been your experience. Indeed, life with chronic illness is about learning to ride a bike in every kind of extreme weather that changes on a dime. One day, it’s 75 degrees and sunny, the next day, there's an ice storm hurling huge pieces of hail at your head; the day after that, it’s so humid that it’s hard to see through the haze as you pedal.

Grasping the magnitude of what we’re asked to do every day is important. So many of us compare ourselves to healthy people, berating ourselves for not being able to meet the same goals as our peers who don’t live with illness. They are riding on a park bike path; we are hurtling down the side of a mountain in a blizzard. It’s not the comparison to others that is important. Nobody ever wins the Suffering Olympics, and we can’t know the hidden challenges that others are facing. What is important is the comparison we often make in our minds between the healthy self and the sick self. When we are having one of those days (or weeks or months or years), we must remember that much is being asked of us. Instead of berating ourselves for low energy and productivity, we can praise ourselves for our fortitude in riding out the storm.

A Learning Perspective

“Why do I deserve praise for lying on my couch?” I hear this from many of my clients who live with chronic illness. Full disclosure: There are times when I struggle with this, as well. We deserve praise because we are navigating tough, ever-changing conditions. We are not pedaling in the park on a spring day. We can do that and do it well. We are trying to stay upright on a rugged path with limited visibility. We need to make adjustments, ride the brake, perhaps even get off the bike for a bit until conditions improve. If we stubbornly refuse to acknowledge the conditions we’re in, we’re going to wipe out. So let’s give ourselves credit for being aware - for looking around and taking stock of what is happening in our body each day. Let’s give ourselves credit for responding to what we notice - for resting, or slowing down, or calling our doctor or increasing our medication. Let’s give ourselves credit for learning - day by day, week by week, year by year - what it means to live in our own unique body as opposed to our idea of what that body should be.

What have you learned about yourself through your journey with illness? What do you know now that you didn't know at the outset?