15. Taming Emotions

Serious illness turns people’s lives upside down, upsetting their hopes and goals, and creating frustration and uncertainty. It’s not surprising that people with chronic conditions experience feelings such as sadness, worry, frustration, guilt, and loss. I was no exception.

Emotions in CFS

My background didn’t prepare me for the strength of the feelings associated with CFS and their apparent connection with the physiology of the illness. I observed, both in myself and in others with CFS, that emotional reactions were stronger than before CFS and harder to control. People with CFS often say they cry more frequently, get upset more easily and have more angry outbursts than before they were ill. As one person in the self-help program wrote, “Just recognizing that emotions are heightened as a result of CFS really helped me. Before learning that, I was quite puzzled by why I got upset about little things.”

I developed a number of strategies in response to my new emotional sensitivity, all based on recognition that I was much more emotionally vulnerable than before. 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.

Depression & Worry

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, I observed that I had an exaggerated initial reaction to relapses, often seeing them as evidence I would never improve. In response, I learned to say soothing and reassuring words to myself when my symptoms were strong. For example, I would say “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.

I spent time observing myself to see what I could learn about what triggered 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.

I also 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.

Other stress reduction tips also helped reduce anxiety. One was the idea to incorporate a relaxation procedure into my daily rests, as I described earlier. Learning more positive and reassuring self-talk was helpful. Exercise or just getting out of the house helped, too, perhaps because being out distracted me from my problems. Finally, talking with others, especially other people with CFS, was calming.

CFS and Adrenaline

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 had 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.

An Unexpected Guest

I experienced another emotion while I was ill, one that took me completely by surprise, but thankfully faded away as I improved. 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 as they return to health. 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 improved. It has never returned.