Make Friends with Fatigue

Americans speak of illness in the terms of war. Dealing with cancer is almost always referred to as a fight or a battle. When a patient dies the obituary often states that death occurred only after a heroic struggle. I would submit that with chronic, painful conditions this endless fighting is a losing and costly strategy, particularly when it comes to dealing with the overwhelming fatigue that is so common among the chronically ill.

When I first became ill, I continued to cling stubbornly to the activities I’d always enjoyed—work, exercise, an active social life, the theater. The consequence of trying to maintain this busy life was that I kept getting sicker and sicker. Finally, when I started to listen to my body and rest when my body was telling me it needed to rest, things began to stabilize and then slowly improve. I learned my mind was sharpest early in the morning, but by mid-morning I needed to go back to bed for a while. Any errands or chores were best done midday. If I wanted to make dinner and enjoy an evening with my husband, I needed to rest in bed in the late afternoon for an hour or two. I learned that my energy tank often hovered near E, and I had no reserve tank. I spent a lot of time in bed for a lot of years.

I feel that making friends with fatigue was a way to honor and respect my illness and integrate my emotional and spiritual self with my physical self. It was an act of making positive peace with the reality of my new life. When I failed to pay attention to fatigue, my symptoms flared and my body let me know the rules hadn’t changed. Sometimes it was worth it to overdo a bit, and pay the price, but most of the time I complied. I learned to love the quiet and my rest period became a cherished time for contemplation and reflection, and ultimately transformation. Once I quit fighting my illness, fatigue became not only my friend, but also my teacher.

Patient Effectiveness: How To Be Sick.

Here’s the frustrating thing. Schoolteachers get training to be schoolteachers. Pregnant moms and their partners can take a class on childbirth. Trained therapists help people deal with mental and emotional problems. Physicians, nurses, lawyers—all get training, years of it, on how to do their job.

Nobody teaches you how to be sick, at least nobody is in charge of it, or certifies it, or let’s you know when you are ready to graduate and do it well. In my experience, it’s a rare and special physician who will diagnose a patient with a chronic illness and then take on the additional role of making sure that the patient has all the resources needed to successfully navigate the difficult journey ahead.

This educational gap is a big reason why being sick is such a hard job. And it’s no wonder sick people often feel so lost, confused and abandoned. Our providers are pretty good, and getting better, about teaching us how to take medications. Not so good at all the rest of the challenges we face, like managing pain, fatigue, grief, work and family challenges, diet, exercise and provider relationships. If I had to name a single reason for this, I’d say it’s because the American health care system is built on the assumption that patients aren’t supposed to stay sick. We believe in cures!

Now that we face epidemic levels of chronically ill citizens and are counting the dollars this costs us, there is movement in our country to become more pro-active at helping people learn how to be sick effectively, and I am a passionate part of it. There are career paths for patient advocates and patient navigators and a national committee has been formed to establish certification standards. There are helpful books, like my own, not on a specific illness, but on the experience of being ill. There are patient support sites and forums and disease specific groups offering resources. Health care and hospital organizations are beginning to offer patient self-management training.

Even with this promising forward movement, I don’t think there is a national sense of obligation to patients. I don’t see a widespread social agreement that sick people need and deserve support they cannot provide for themselves. Effective patient education is far from a standard of care. Change can’t come too soon.