Self Help and CFIDS
Part 2 of 2
By Bruce Campbell, PhD

In the spring issue of the Chronicle, Bruce Campbell, a person with CFIDS, described part of his self-help recovery program. He became ill with CFIDS in 1997, but today estimates that he has regained nearly 90 percent of his former energy levels.

I found that CFIDS touched all aspects of my life, affecting how much I could do, my ability to work, my moods, my relationships, my finances, my hopes and dreams. In response, I used a variety of self-management strategies. I described several in Part 1 of this article and will outline several more here.

In my first several months with CFIDS, I was on a roller coaster. I rested when my symptoms were intense, then was overactive when the symptoms declined. Doing too much led to high symptoms again and the demoralizing cycle started over.

I was living in response to my symptoms, which left me feeling my life was out of control. The idea of pacing offered an alternative. Pacing meant finding the right balance of activity and rest, and applying that balance on an everyday basis.

The key was to live a life that was planned, with a similar amount of activity and rest every day. Having a consistent level of activity made sense, but I resisted the idea of scheduling rest every day. It was hard to accept the idea that I needed to lie down voluntarily regardless of how I felt.

I decided to try it by having a 15-minute rest every afternoon. Much to my surprise, the rest helped, reducing my symptoms and making my life more stable. After a while I added a morning rest as well. I also experimented with how I structured my rests, finally defining rest as “lying down in a quiet place with my eyes closed.”

I found that taking these “pre-emptive rests,” as a friend called them, enabled me to reduce the time I spent in “recuperative rest” or resting in response to symptoms. The result was that my total rest time was reduced. Looking back, I think the two daily rests were the most important thing I did to aid my recovery. Resting on a planned schedule greatly stabilized my life.

Getting support — and helping others
Within weeks of receiving my diagnosis, I joined two local support groups. The experience was especially useful because of the friends I made. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that some don’t believe is real. Illness is isolating; feeling connected to others gave me a sense of belonging. Also, fellow patients were tremendous sources of information and perspective.

Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think that served me well. I took CFIDS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to my peers from work. That comparison took a lot of pressure off.

A few months after receiving my diagnosis, I started a self-help class for myself and other patients I had met. Over time it has become the CFIDS /Fibromyalgia Self-Help program (see note at end of story). Even though I didn’t realize it at the time, leading the class helped me deal with one of the greatest challenges of chronic illness: finding new meaning in response to massive loss. By developing new goals and focusing on what I was still able to do, I found a way to feel useful even when previous roles had fallen away.

Controlling stress
I was surprised at how easily I was upset by stress. Even modest amounts of stress greatly intensified my symptoms, creating a feedback loop in which my symptoms and my response to them intensified one another. Once I realized how vulnerable to stress I had become, I decided that dealing with stress sensitivity had to be a big part of my effort to manage CFIDS .

My first reaction was to try various strategies for stress reduction. The most helpful proved to be a regular relaxation/meditation practice, which I included in my daily rests.

Stress avoidance proved to be even more helpful. I learned that I could prevent stress by avoiding those things that caused it. The most useful strategy in that regard was routine, living my life as much as I could according to a plan. Having a daily schedule of activity, rest, exercise and socializing at set times gave structure and predictability to my life.

I also learned to identify and avoid stress triggers, those situations and even specific people that set off symptoms. I learned, for example, that I was vulnerable to sensory overload after observing how noisy situations quickly led to intense symptoms.

Managing emotions
I knew from my work at Stanford that strong emotions are normal reactions to having a chronic illness. Serious illness turns people’s lives upside down, upsetting their hopes and goals, and creating frustration and uncertainty. So I knew intellectually that managing emotions could be just as challenging as managing the physical aspects of the illness.

I don’t think this background prepared me, however, for the strength of the feelings associated with CFIDS and their apparent connection with the physiology of the illness. I felt less in control of my emotions than at almost any time in my life.

I developed a number of strategies in response, all based on recognition that I was much more emotionally vulnerable than usual. First, I observed that the strength of my emotions was often associated with the strength of my physical symptoms, and that the strategies used to control symptoms also helped moderate my emotions.

Second, I observed that I had an exaggerated initial reaction to relapses, often seeing them as evidence I would never improve. So I learned to talk in reassuring tones to myself. I consoled myself by saying things like “you’ve always bounced back from other setbacks” or “remember how life looks better after you’ve rested.”

Third, I trained myself to mute my emotions after observing the toll that strong emotions took on me, whether positive or negative. It seemed that experiences that triggered the release of adrenalin led to an increase in symptoms. As a way to avoid symptoms, I tried to cultivate a Zen-like calmness and to construct a life that emphasized routine.

Tapping the power of self-help
My self-help approach began with an acceptance that my life had changed, perhaps forever and certainly for an extended period. I also acknowledged that my illness imposed limits on me, and decided that living a disciplined life consistent with those limits offered the best chance of controlling symptoms and improving my quality of life. Finally, I had confidence that I could find things that would help me get better and committed myself to experimenting to find what worked.

My approach of using self-help exclusively was different from that taken by most patients. Under different circumstances, I might have combined a self-management approach with a medical one. But self-help served me well, enabling me to regain most of my lost health gradually over a period of four years, using techniques I believed were safe and prudent, focusing as they did on living within limits and extending those limits very gradually as allowed by the illness. I hope my experience will suggest to other patients that attitude and behavior can have powerful effects on health.