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.

Be Honest About How You Feel

When someone asks, ‘how are you?’ the customary answer is just one word, ‘fine’. Those of us who live with chronic illness and pain are hardly ever fine. Maybe better than yesterday, or good enough to make it out of the house for a while, but fine? Not often.

If we are going to build a supportive community around us, we need to be honest about how we are feeling. It’s not in our interest to imply we are fine when we are not. We also don’t want to be a constant complainer, because no one wants to be around that person. Being honest about how you are feeling requires a bit of balance.

The trick, I’ve found, is to first be realistic about the person you are talking to and the context of the conversation. Then be as honest as you can, without whining. For example, some people don’t really want to know how you are; they’re just making small talk. It’s like the person who says ‘let’s do lunch sometime’ more to end the conversation than to actually make a date for lunch. So, I might say to this person no more than, “I’m just OK today.”

Someone who actually cares, but is on the periphery of your life might get a little more expanded answer, “It’s been a tough week, but I’m starting to feel better today.” Or conversely, “I’m just at the beginning of a flare, so I’m going to enjoy today as much as I can.” This conversation may or may not go any deeper.

For someone who is truly part of your everyday life, knows you well and knows you are ill, you need to tell the truth because the way you are feeling from day to day also affects them. “I need you to know I’m having a rough day today, so if I’m quiet or seem moody, it’s not you, I just don’t feel very well.” To the children it might be, “Mom’s going to need a helping hand from you today. I’m not feeling too strong, so thanks for being my big boy/girl.”

It is possible to be honest without coming across as a victim. It is possible to ask for help without seeming helpless. The people who really care about you would prefer to know the truth and will be supportive. If there is someone in your life who wants you to pretend to be doing great all the time, maybe they need a little push to get real, or a harder push to move outside the strong circle of support that you are building around you.

Never, Never, NEVER Give Up

The sick are tempted to give up in many ways. The most tragic is to give up on living in response to unrelenting pain. Hopefully before this level of despair takes hold, we can find ways where persistence can move us toward a better life, even with illness, and even while living with pain and reduced function.

The first path is to never give up until you find a competent doctor, experienced in dealing with your symptoms or diagnosis. The next step is to begin effective treatment. For many of us, just accomplishing this takes years. Patients with vague, hard to diagnose illnesses are often sidelined by doctors who don’t know what to do with them. Our health care system pays for procedures and interventions, and if your doctor doesn’t connect you with the tools in his or her toolbox, you may be treated, literally, as if you are not worth much. Doctors may respond to their own lack of expertise by blaming the victim, implying that if the fix isn’t obvious, you must be faking, malingering or mentally ill. Understandably, after experiencing this kind of treatment, patients can be tempted to give up looking for answers, taking refuge in bitterness, or magical thinking about magical cures, or by taking the mediocre doctor’s prescription to heart and deciding to ‘just live with it’.

A better solution is to fire the doctor, move on, and never give up until you meet the person or, more likely, the team that can offer help. There are outstanding physicians out there, and they are not necessarily at elite institutions. They are in small towns, and in small practices. Thy may have the wisdom of years, or the fresh insights and enthusiasm of youth. They may be GP’s or internists who will know where and to whom to refer you. Keep looking. Once you have found your partner, know that settling on effective treatment may also take time, a lot of it. You are unique, your symptoms and your system is unique, it may take dozens of trials and adjustments and the aid of many providers before you hit on the combination that helps bring your symptoms and system into better balance. This persistence does not guarantee a cure, or even the elimination of your symptoms, but it may mean you can find relief that keeps your illness from progressing and makes your symptoms less severe, so that you can live more fully.

Finally, making peace with your new life is not the same as giving up. Wailing about all you have lost and how much you want your old life back is part of the grieving you may need to go through, but it is also stressful and exhausting. At some point we need to accept our new life with illness, while never giving up on making it the best life it can be. These aren’t mutually exclusive, but two parts of a healthy whole.