Smoothing the Emotional Roller Coaster

By Bruce Campbell

(Note: This article is adapted from the website Recovery from Chronic Fatigue Syndrome: One Person's Story.)

Before getting Chronic Fatigue Syndrome, I knew that it is normal to feel strong emotions when you have a chronic illness. But my background didn't prepared for the strength of the feelings associated with CFS.

When I got CFS, I felt less in control of my emotions than at almost any time in my life. In response, I developed a number of strategies, all based on recognition that I was much more emotionally vulnerable than usual.

The first strategy was based on the observation that the strength of my emotions was often parallel to the severity of my physical symptoms. A low mood often occurred when I had higher levels of symptoms (most often fatigue, brain fog or both).

I found that the strategies I used to control my physical symptoms also helped moderate my emotions. In particular, resting seemed to reduce the intensity of emotions as well as alleviating my physical symptoms.

Fighting Depression

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 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."

Calming Worry

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 his statement that anxiety often has a physical basis and should not be seen as a character flaw.

Perhaps the most helpful idea in his 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 some of 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 mostly 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 identify the circumstances in which I experienced anxiety. A common one was when I felt under pressure. The anxiety I experienced when I thought I had too much to do led to an adrenaline rush and frenetic activity.

Taking a step back to observe myself 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.

A Surprising Reaction: Paranoia

I experienced another emotion during the time I was sick with CFS, one that took me completely by surprise: paranoia. Even though I had never experienced paranoia prior to getting CFS, I encountered it in the months after becoming ill.

Part of me was convinced that people were out to get me. I tried telling myself that this didn't make sense, but a part of me wouldn't believe that and remained convinced that there were people intending me harm.

I was very confused by this until I read in Hallowell's book about children who developed OCD (obsessive-compulsive disorder) when they had strep infections. The symptoms started when the infection began and disappeared after the children were treated.

Hallowell wrote that the children's experience showed that "a purely physical event" could cause a psychological syndrome. My experience paralleled that of the children.

The strength of my paranoia was closely related to the strength of my physical symptoms and the paranoia faded away as my CFS symptoms declined. It has never returned, but my strange encounter with this emotion left me amazed at the mysterious connections between mind and body.