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By Bruce Campbell

(Note: Fourth in a five-part series on self-management skills.)

 

Living successfully with ME/CFS or FM requires not only changing what we do but also what we think, so making mental adjustments is another self-management skill.

 

A key part of mental adjustments is reframing, which means seeing things in a new, more accurate and productive way. I’ll discuss it in this article, making use of both my own and other people’s experience.

 

A second part of mental adjustment is changing our self-talk, also known as our inner dialogue or the voice in our head. A third type of adjustment is changing expectations for ourselves, to put them in line with current abilities. These last two parts of mental adjustment will be the subject of the next article.

 

My first reframing came with the diagnosis of Chronic Fatigue Syndrome. It was a relief to have a name for my suffering and to know I wasn’t crazy.

Since then, I’ve heard many other people express the same sentiment, such as the person in our program who wrote, “Once I had a name for it, I was relieved of the fear that I was hypochondriac or losing my mind, or just de-conditioned. At least I knew what I was dealing with.”

 

The second reframing was more sobering: the realization that I had a long-term problem that was not well understood and for which there was neither a cure nor a reliably effective treatment. Adjusting fully to that idea took several years.

 

A related insight was the recognition that I would have to lead my life differently than before. Before ME/CFS, I might have been able to ignore a health problem and just push through it, but I soon discovered that approach was counterproductive with ME/CFS and only made my symptoms worse.

 

Having the term push and crash enabled me to see that, contrary to my previous belief that fluctuations in my symptoms were random, I now had to consider that they were the result of how I lived my life. That recognition created a disturbing realization: I had been causing a lot of my own suffering.

 

Though depressing at first, I then saw that this fact was also the basis for hope. If how I lived my life had such a big effect on my symptoms, then I might be able to gain some control by changing how I lived.

 

Another key reframing was changing how I viewed ME/CFS. During my first year with ME/CFS, I thought of it as a relentless enemy, a wall that I couldn’t get over, under or around. Then one day I said, “OK, CFS. You win. How do you want me to live?”

That was a big reframing: deciding that the only possible way to regain control was by accepting that ME/CFS was in charge. By that I mean that ME/CFS created new rules and new boundaries, so I needed a new perspective and a new relationships with it. Rather than fighting ME/CFS, I needed to find a way to live in harmony with it.

 

Another area of reframing was my ideas about recovery. Even though recovery is rare with ME/CFS and FM, I spent my first couple of years with ME/CFS assuming that I would be one of the exceptions, 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 ME/CFS. 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.

 

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.

 

 

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, focusing 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."

 

I found inspiration in his 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 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.

 

The idea of focusing on control led to a reframing that proved very productive, namely the idea of concentrating on living from the present moment forward, rather than getting stuck in punishing myself for previous mistakes. I learned to say to myself, “What can I learn from this experience that will help me live better?”

 

Someone in our program expressed the same sentiment when she wrote about her experience with ME/CFS,

 

 

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. 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.

 

A testimony to the power of acceptance was offered by a person in our program who wrote: