Personal Guidelines For Managing Chronic Illness

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By Bruce Campbell

Do you ever feel completely confused by your illness, wondering what you should do next? It was an experience like that which led me to develop the idea of having personal guidelines for managing chronic illness.

One day early on in my life with CFS, I found myself in a deep fatigue with severe brain fog. The fog made me so confused I didn't know what I should do next. "If only," I said to myself, "I had a few simple directions on a small card, I could know what to do right now." So I decided to create them.

I sat down and wrote out just a handful of guidelines that I could turn to for direction in times of confusion, rules that could guide my recovery.

From time to time, we have asked members of our classes to write their own guidelines. (You'll find my own guidelines plus two examples from our groups below.) Their thoughts on managing illness have combined practical coping techniques with ideas that promote psychological adjustment. As I reflect on what people have written, I find several common themes:

Uncertainty: From the unpredictability of everyday life to not knowing whether one will improve, having a long-term illness means living with uncertainty.

Accepting Responsibility: Even though we may not have control over the illness, there is much we can do to improve our quality of life if we accept responsibility for taking care of ourselves.

Accepting Limits: Pacing or living within the limits imposed by the illness is a key strategy for gaining some control over symptoms and living a more predictable life.

Flexibility: Circumstances change constantly. A flexible approach makes coping more effective.

Creating Meaning: It is possible to lead a meaningful life in spite of the illness and its challenges.

My Personal Guidelines for Managing ME/CFS

1) Live within my energy envelope

I have learned how to reduce symptoms and lead a more predictable life by living within the limits imposed by the disease. This strategy includes:

• Keeping a routine of daily, scheduled rests
• Logging, both to record events and symptoms, and to motivate me  
• Taking extra rest after a relapse or illness
• Avoiding stressors
• Continually refining ideas about how to stay within the Envelope

2) Extend the envelope gradually

I am willing to take prudent risks to expand my activity level. Expanding means trying 5% to 10% more at a time. I recognize that not all my experiments will work, and that it takes patience and discipline to extend gradually, but overall this strategy has been very successful for me.
 

3) When all else fails, go to bed

There are times when the best course is to surrender to the illness. Having this guideline has given me permission to acknowledge that at times I am powerless over the disease and the smartest course is to give in to it.

4) Accept that I may not recover

I believe I can create the conditions for recovery but can't control whether I recover. Thus, I try to focus on feeling better, which I think is under my control to some degree. I believe that the strategy that gives me a good quality of life may also help me recover, but there is no certainty about outcome.

JoWynn Johns' Guidelines for a Good Life

[JoWynn is a CFS patient from Maryland and a graduate of our course. She has been disabled by CFS since 1993, but has reduced her symptoms dramatically using a self-management approach.]

I don't expect to recover (although, of course, I could) and I don't look for relief in the future (though that may come). I want to live well now. These guidelines sum up what I've learned that helps me do that.

1) Accept myself as I am now

I'm not the person I used to be, nor am I the person I wanted and expected to be at this point in my life. I am an invalid, unable to function as I once could.

2) Accept responsibility for taking care of myself

I didn't make myself ill. But I sure can make myself feel better or much worse by the choices I make about how to live. If I were caring for an injured loved one, in distress, how would I take care of her?

Would I expect or allow her to do chores that I knew would make her feel worse? I'm the only one who can figure out what I need and how I can be as comfortable as possible. It's up to me to do that for myself.
 

3) Embrace solitude and silence

Being with other people, especially in groups, being in busy places, noise and activity make my symptoms much worse. Over time, I have come to appreciate solitude and silence.

Alone and in quiet long enough, my mental agitation calms down; my problems with concentration and memory and finding words go away; the mind fog clears up and my vision improves. In solitude, I get my mind and my peace of mind back. I've learned to enjoy the pleasure of my own company!

4) Practice letting go

I can make myself very unhappy by thinking about all that I've lost, about the activities I can no longer do, about the relationships and experiences and possessions I can't have, about the contributions I can't make, and about the help I can't give. But I don't want to be unhappy! So I work at letting all that go, not letting it hang around to make me blue.

5) Give thanks

I'm thankful for the time I have now. I never had enough time in my past life. Now I have time to pay attention to small things around me, to pay attention to myself and get to know myself, to pray and praise and pamper. Although this is not the life I wanted, it's a good life nonetheless.

Lisa Lorden's Guidelines for Managing CFS & Fibromyalgia

[Lisa, a young single person from California, has had CFS and fibromyalgia since 1995. For several years, she was the guide for the Chronic Fatigue Syndrome/Fibromyalgia website at About.com.]
 

I believe that the guidelines for managing CFS for me will always be a work in progress. Through participation in Bruce's course, I have just begun to examine some of the concepts and strategies that I think are probably crucial to managing my illness and/or recovering from it.

1) Practice rest

Before this course I only thought I was resting! And I didn't realize what a difference complete rest, even for a short time, on a regular basis can make. I've learned the value of rest and pacing myself, and that rest means lying down with my eyes closed (no TV, telephone, etc.) I need to incorporate rest into my daily routine whether I feel exhausted or not.

2) Remember that everything is negotiable

Since being ill, I've gotten gradually better at realizing that nothing has to be done. The most important thing is to take care of my health...the rest can be prioritized, put off, worked out, or perhaps should be eliminated entirely.

3) Ask for help in a specific way

A natural "helper" before I was ill, I was not used to being the one asking for help. But I've realized that not only is it very important to my own well-being, it can also be a gift to others. Often friends and family feel so helpless, they are thrilled when I can ask for assistance with a specific task.

4) It's OK to have a good cry

The monotony of living with pain and loss day after day tends to numb my emotions. Feeling "dead" on the outside is bad enough, but sometimes I realize I've been feeling "dead" on the inside. When emotions (that I often don't realize are there at the moment) bubble up, sometimes it helps to just cry for a few minutes. Afterward, I might feel tired, but I often feel better.

5) Find value in my life whether or not I recover

I am not the person I was, and I probably won't have the same kind of life I thought I would. But whether or not I recover, I try to bring as much meaning as possible to my life now and to value the core qualities in myself that have not changed. I try to remind myself that I still make a difference to other people, and I can still contribute to their lives. 

[Note: Article written in 1999. Updated in 2018.]