I knew from my work at Stanford that it is normal to feel strong emotions in reaction 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 CFS 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; they seemed to be independent forces.
I developed a number of strategies in response to my new emotional state, 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. A low mood occurred when I had higher levels of symptoms, usually fatigue, brain fog or both. The strategies I used to control symptoms also helped moderate my emotions. In particular, resting seemed to reduce the intensity of emotions as well as alleviating my physical symptoms.
I found a couple of other strategies helpful for depression. Contact with other people, even if just a phone conversation on everyday subjects, could reduce and even reverse my mood when I felt down. I think that occurred because the sense of being connected to someone else was reassuring and counteracted the stress of isolation.
Also, as I mentioned before, I found it helpful to fight my negative self-talk by saying soothing things to myself when symptoms were strong. 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."
In addition to experiencing depression from time to time, I also struggled with anxiety. Edward Hallowell's book Worry was very useful, showing me many practical ways to reduce anxiety. I also appreciated the author explaining that anxiety often has a physical basis and should not be seen as a character flaw. Perhaps the most helpful idea in the book was the suggestion to incorporate a relaxation procedure into my daily rests. Learning more positive and reassuring self-talk was helpful for anxiety, just as it helped depression. Exercise or just getting out of the house helped, too, perhaps because being out distracted me from my problems. Finally, talking with others, especially fellow patients, was calming.
I trained myself to mute my emotions after observing the toll from strong emotions, whether positive or negative. It seemed that any event that triggered the production of adrenaline made my symptoms worse. This effect was most noticeable with brain fog. I first noticed this under happy circumstances. I was moved to tears at the last session of one of our first self-help groups, as people talked about the meaning the class held for them. I noticed that my joy was accompanied by a heavy dose of brain fog, which didn't lift until a half an hour or more later. After this event, I noticed that situations that made me anxious also resulted in brain fog.
As a way to avoid symptoms triggered by the production of adrenaline, I tried to cultivate calmness and to construct a life that emphasized routine. I paid a price, of course, losing the enjoyment brought by positive emotions, but for four or five years the trade-off was worth it. Even if I felt like I saw the world in gray rather than in color, it was a price I was willing to pay to avoid brain fog.
While I was ill, I tried to observe myself when I experienced anxiety. I noticed that when I thought I had a lot to do, I got anxious. The anxiety led to an adrenaline rush and frenetic activity. Observing helped me to detach from the reaction, taking away its inevitable character. Then I began telling myself to be calm when I started to get anxious, that I could choose whether I would act. I have gone through this sequence enough now that I think I've established a new habit, freeing myself from some needless anxiety.
I used writing to combat anxiety. As I improved, I kept a journal recording my thoughts about resuming a "normal life." I started this exercise when I observed that I was slow to expand my activity level, even when others told me it would be safe. What was the basis for my irrational fears of expanding my activity? By writing about my fears, I was able to recognize that I was carrying around apparently outdated beliefs about safe activity levels.
I experienced another emotion while I was ill, one that took me completely by surprise, but thankfully faded away as I improved. I was shocked when, soon after becoming ill, I developed a mild paranoia. Part of me was convinced that some of my neighbors were out to get me. Even though I told myself this idea didn't make sense, a part of me was convinced it was true. I was very confused by this until I read in Hallowell's book about children who develop obsessive-compulsive disorder (OCD) when sick with a strep infection. The symptoms start when the infection begins and disappear after the children are treated. Hallowell wrote that the children's experience showed that "a purely physical event" could cause a psychological syndrome. Seeing my paranoia as a mental distortion caused by CFS, I did not act on it and the final result for me was similar to the children's experience. My paranoia disappeared as my CFS symptoms declined.
(For more ideas about handling the feelings triggered by Chronic Fatigue Syndrome, see the articles in the Emotions archive at the website of the CFIDS and Fibromyalgia Self-Help program.)