Reframing, Part 1: Combining Acceptance and Hope
By Bruce Campbell
Living successfully with CFS or FM requires not only changing what we do but also how we think. Most of the mental changes can be called reframing, which means to see things in a new way or from a new perspective. Sometimes, it can make all the difference.
My Assumptions vs. The Reality of CFS
Without adjusting how I thought about myself, I would never have developed the approach that led to my recovery. A lot of my reframing involved my slowly recognizing that CFS is very different from short-term illness and living successfully with it is governed by different rules.
In the past, I might be able to ignore a health problem and just push thru it. I soon discovered that was counter-productive with CFS. It only made my symptoms worse. Similarly, it took the better part of a year to see that fluctuations in my symptoms weren't random, but rather the result of how I lived my life.
When my symptoms were high, I rested. When rest produced a reduction in my symptoms, I resumed activity but my activity triggered once again produced higher symptoms. I eventually recognized the pattern as the classic cycle of push and crash.
The recognition created a disturbing realization: I had been causing a lot of my own suffering. Though depressing at first, I saw that this fact gave me a way to improve. If the way I lived had a big effect on my symptoms, then I might be able to gain some control by changing how I lived. A negative became a source of hope!
Recognizing that the rules for living well with CFS were very different than the rules I had used before led to other insights. I noticed that if I walked longer than usual, there was no increase in symptoms at the time, leading me to think that maybe my limits had been relaxed. But I noticed that my symptoms were intensified later in the day or even the next day. This led to understanding that the effects of overexertion can be delayed.
The idea of delayed reactions led to the unnerving question: how can I control my symptoms if I can't trust my body to warn me when I am overdoing it? I decided that I would have to define my limits through trial and error, which I did by keeping records of activity and symptoms. Once I understood my activity limits, I could free myself from the cycles of push and crash, because I knew when to stop, even if my body didn't send me a signal at the time.
Sense of Specialness
Another area of reframing was my ideas about recovery. Even though recovery is rare with CFS and FM, I spent my first couple of years with CFS assuming that I would be one of the exceptions. I told myself that I would be one of the lucky ones who got their old lives back. This belief was helpful for a while, enabling me to keep hope alive and to adjust to all the losses and uncertainty created by CFS.
I had trouble letting go of the hope that my old life would return, but hoping for recovery created problems, too. By having recovery as my goal, I lived on an emotional roller coaster, buoyed by signs of progress but devastated by my setbacks. I asked myself what was the alternative to hoping for recovery, accepting a lifetime of suffering?
Wrestling with these issues helped me to understand the distinction between those things I could control and those things I couldn't. It was clear that my actions and attitudes had an effect on my symptoms. If I did too much one day, I suffered increased symptoms the next. If I responded to stress with worry, that too would make my symptoms worse.
So my choices and habits had effects. My attitudes and actions affected my symptoms. But affecting symptoms is not the same as creating recovery.
Acceptance vs. Resignation
Dean Anderson's recovery story provided both insight and inspiration as I was struggling with whether recovery was an appropriate goal. He followed a path much like the one I had adopted, turning away from medical treatments and instead focused on figuring out what he could do to make himself better through changing his attitudes and behaviors.
He wrote that after trying various approaches, he had come to believe that the key was a certain kind of acceptance. He described it not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life."
He went on to say that "the 'effort' required to recover from CFIDS [his term for CFS] is an exercise in discipline and hopefulness, not determination and striving." His discipline was the discipline "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing."
I found inspiration in Dean's description of how he combined acceptance of being ill with hope for a better life. That seemed the right balance. On the one hand, I felt I had to acknowledge that my life had changed and that my old life might never return. On the other hand, however, I found comfort and hope in the belief that there were things I could do that would bring improvement.
I finally concluded that whether I recovered was out of my hands. I believed that there was a limit on how much I could improve, but that it was impossible to predict what that limit might be. I decided to focus on finding ways to control symptoms and improve my quality of life.
I was sure that I could find many things I could do to improve my situation. By suspending expectations about recovery, I could focus on what I could do to make my life better.
Acceptance and Hope
For me, the combination of acceptance and hope was crucial. Acceptance meant acknowledging that I had a serious illness and needed to lead a different kind of life, probably for the rest of my life. But acceptance was not resignation. I also had confidence that there would always be things I could do to improve my situation, even if I didn't recover fully.
Combining acceptance of CFS with hope for improvement enabled me to resolve my dilemma of how to have a goal that was both realistic and positive. My approach was based on a kind of faith, the belief that my body had an innate drive to reestablish good health.
I felt confident I could discover what would support my body's recuperative powers, and that I had a responsibility to live consistently in a way that allowed these powers to be expressed.
In the familiar understanding of grief, the end stage is acceptance. I could identify with that in part, but for me the final stage was more complex. Acceptance meant recognizing that my life had changed, perhaps permanently and certainly for an extended period of time.
It meant letting go of my past life and also of the future as I had envisioned for myself. But it had another component as well, a confidence that I could find things to improve my life. I called it acceptance with a fighting spirit.