What Works for Managing CFIDS and Fibromyalgia

6: Managing Emotions

By Bruce Campbell

Emotions present another area of challenge to people with CFIDS and fibromyalgia. Strong feelings like depression, grief and anger are normal reactions to being ill. 

This article presents coping strategies for emotions from participants in our course. You’ll read about what they have found helpful in responding to depression, grief and anger.

Emotions Made More Intense

First, a general comment about emotions in people with CFIDS and fibromyalgia. Common emotional reactions to being seriously ill seem to be intensified by our illnesses. CFIDS and fibromyalgia appear to make emotional reactions stronger than before and harder to control, as indicated in the following quotes. This process applies even to positive emotions, as the last quote suggests.

“My emotions are much more sensitive than ever before. I cry more easily, and I have less emotional reserve to listen to my teenagers and husband and talk with them about their concerns. As a result, we end up in a circle of misunderstanding and unnecessary recriminations.”

“It helped me to realize that when I am angry or sad or whatever, frequently it is because of the illness and not because of whatever is happening in that moment.”

“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 have found by logging that emotions play a bigger part than most anything else in my symptoms and the effect lasts for several days after the emotion has passed.”

“I cried at one of the classes, because I was so happy to be around people who understood me. Almost immediately, I had an attack of brain fog. The experience helped me realize that any experience that triggers adrenalin, whether positive or negative, makes my symptoms worse.”

Fighting Depression

Depression is a normal reaction to any chronic illness, because of the isolation, uncertainty and loss brought by sickness. Below you’ll find eleven strategies used by  people in our program to counteract depression. If you’re like most people, some may appeal to you but not others. I suggest you try several to see what works for you. The important point is that there are usually actions we can take to help improve our mood. If depression is severe, self-help strategies may not be sufficient; medication and professional help may be appropriate.

1) Rest

“I can usually tell when I am doing more than my body can handle because I start to get depressed, not to mention short tempered and cranky. If I am well rested I am much happier.”

“Strong symptoms and strong emotions go together for me. Sometimes the only way I have been able to reduce the intensity of emotions is by reducing my symptoms through rest.”

2) Exercise

“I nearly always feel elated after exercise. Natures' own coping mechanism has a very powerful effect.”

3) Problem-Solving

“I've found that using problem solving to address a problem is useful. Losing the sense of helplessness and taking action to gain a sense of control/power over the situation is important to me.”

“I handle emotions better if I do something rather than passively suffer.”

4) Reaching Out  

“I reach out to others on the phone and through 12-step meetings and have made friends here in my new home.”

“If I start feeling too isolated, I call a friend or relative, or contact people through the Internet. Just telling someone else what I am going through can give me perspective.”

5) Support 

“When I’m down, I get on the Internet and go to a CFIDS/FM message board where I have been posting regularly. I get absolutely wonderful support from these people whom I've never even met. I also have a friend from college who I e-mail. I can always count on her for support and wise advice.”

“I find it very helpful to talk to others who are going through the same thing. For me, it's important to be able to identify with others so I don't feel so alone in this.” 

6) Saying Consoling Things to Yourself 

“If I feel down, I remind myself that life is a series of hills and valleys, and that even though I may be presently in a valley, eventually I will be once again on a hilltop. I tell myself that I can put up with the present discomfort because my mood is temporary.”

“For coping with strong emotions, I use soothing self talk. I speak to myself as if I'm speaking to a child who I love dearly.” 

7) Applying Thinking Skills

“If I am having a bad day and find myself feeling that everything is hopeless, I remind myself that ‘feelings are not facts’. Feeling a certain way does not necessarily reflect an accurate picture of the real world.”

“Often it helps me not to talk about how down I feel in order to get my mind off myself and focus more on the positive.”

8) Immersing Yourself in Pleasant Activities 

“I have found it very helpful to fight the blues by doing something pleasant. For me, that involves quiet activities like reading, building a jigsaw puzzle, or needlework.”

“I have several low-key activities which can help when I am feeling ill. They are simple things like lying out in the sun, reading, and making jewelry. It is important to me to have a creative outlet of some sort, and I can string beads even on ‘bad’ days.”

“I use my fun activities to divert my down moods. I force myself to let go of my ‘to do’ list and do something I know will set me in a better state of mind.” 

“I have multiple interests, so when I'm feeling down, as soon as rest improves the situation, I can find diversion. Playing music always helps.”

9) Therapy 

“Just talking to an objective person and looking at my life in a different way have been extremely helpful. I think I have reached a clear but somewhat fragile level of acceptance of my illness as something I will probably have for the long term.”

“I have been seeing a counselor who specializes in helping people with chronic health problems, and I have learned an enormous amount. Now my husband and I are seeing her together, to help him deal with the stress of having a chronically ill spouse, and to help us work out problems together.”

10) Helping Others 

“It helps to break a dark mood if I can do something to help someone else. This can be as simple as a phone call to an elderly friend, or passing on a book that I have enjoyed.”

“I feel better when I do something for somebody else. I love to bake and if I am up for it physically, I will bake something and give to a friend, neighbor, or my family.”

11) Managing Stress 

“Learning how to avoid and manage stress has been a good overall strategy to help me manage my emotions. With any sort of stress, my emotions get more extreme. So, living with a routine and trying to keep my activity within my energy envelope really helps reduce the stress and level off my emotions.”

Responding to Loss

Serious illness brings many losses, including the loss of activities that brought pleasure and meaning to our lives, the loss of friends, loss of income and even loss of control over our lives. The pervasiveness and depth of loss present us with two more challenges: letting go of the past and building a new life. Creating new meaning in the face of massive loss is a crucial task in learning to live positively with illness. Below you’ll find six strategies for handling loss that have been mentioned by people in our program.

1) Acknowledge The Losses

“What helped me accept what I had lost was to acknowledge the loss publicly. I sent out a Christmas letter that announced my illness and said ‘it is unlikely that I will recover.’ Saying it openly like that helped me accept my limits and to get on with my life.”

“I feel as if my healthy self died on the day I got sick, and I'm just coming to terms with that now. But the magnitude of loss is as if someone died. I am feeling the need to bury that old self.”

2) Focus on The Future 

“I take responsibility for crafting a life I can love under my current circumstances. It is empowering to know that this is my choice and responsibility, and that I don't have to be miserable and at the mercy of this loss. ...I need to bury that woman [old self]  and move on to my new life.”

“I told myself that even though my life was not the one I thought it would be, it could still be a good life. Accepting that my life had changed and focusing on what I still could do was very useful.”

3) Seeing Options 

“In fighting the emotional aspect of chronic illness, I find it helpful to recognize my options. I like what our book says: ‘Whatever our losses and limits, they still leave us with options and choices. By focusing on what remains under our control, we can maintain a positive spirit and increase the likelihood of improvement.’ So I am focusing on discovering what remains under my control.”

“Instead of seeing so much limitation, I'm beginning to see more options and realizing how lucky I am to have options.”

“I have had many craft and artistic pursuits over the years, from sewing to quilting, needlepoint, knitting, crochet, cross stitch, etc. Now I’m doing rubber stamping and calligraphy, which fit my current abilities better because I can do them in short spurts. Discovering these artistic media has been a major aspect of my getting past the grief and loss of who I was before FMS.”

4) Developing New Interests and New Meaning 

“I learned to focus on what I have left. I call it "Discovering New Ways To Enjoy Life." I would perform a problem solving exercise, writing down the activity, say traveling, and coming up with new ways that I could organize travel, or if not that, learn about new places in other ways, such as videos, books, TV. I was able to find new ways to receive pleasure and fulfillment.”

“Just as single people hang out with single people and married couples with children find like couples for companionship, I realize that my friends and interests need to change as my physical and emotional circumstances change. More importantly, I have learned that this change is OK. At first, I was saddened to give up some of my social activities but as I sought activities and interests more in-line with my physical needs and mental needs I was so much happier.”

“I’m working on finding new ways to bring meaning to my life. I try to find ways to be ‘useful’ to others and pursue activism in my own small way, like by helping with our local support group newsletter, online email & petitions or letters to senate members.”

5) Consolation 

“For all the emotions of the grief cycle, I try to remind myself that this feeling will pass. I've been here before and made it through. No matter how bad it feels, it is just a feeling and will pass.”

6) Counting Blessings

“I try to look at the positives and appreciate the things I still have, and the new things that come into my life that are good.” 

“I try to think about others in the world whose lives are far, far worse than mine. It makes me realize how lucky that I am and focus on the blessings in my life. And it also makes me realize the resilience of the human spirit.”

Confronting Anger

Being sick is frustrating. People in our program report the following four strategies for dealing with their anger. They focus on the principle of finding a non-harmful way to acknowledge and express the feeling.

1) Talk It Out

“I find if I can talk out my anger with someone it releases the anger. The frustration and rage I felt about becoming ill has eased considerably since I joined a supportive group. I feel lucky to find a place to vent, be accepted and feel understood.”

“I try to deal with my anger by talking about it or writing about it or simply doing something else to distract myself from it for a while.” 

2) Write Unsent Letters 

“One thing I've learned that helps me is to write a letter to who/what I'm mad at. I let everything and anything spill out, not worrying about how it looks or sounds. Later I shred it for no one ever to see!”

3) See Things from a Fresh Perspective 

“I’ve learned to thinking about things in alternative ways. By taming my thoughts, I find that a lot of anger has disappeared and this is a most wonderful feeling. I have now reached the stage where most of this new thinking is automatic.”

4) Accept and Acknowledge the Feeling 

“What seems to work for me is to think about the emotion I am having. If I am angry, I will say ‘Ah, that is anger‘. Then I say ‘I accept this anger’  Then I describe the anger. Is it a huge anger or smoldering anger or little anger. Then I notice how it feels in my body.”

Coming Next: What Works for Improving Relationships

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