Meeting the Challenges of Long-Term Illness

Creating a New Life

By Bruce Campbell

You didn’t choose to be sick, but you can choose your response. By deciding how you are going to live with illness, you can make your goal living the best life possible under the circumstances. In doing so, you shift from a focus on what you have lost to a positive one: where you want to go and who you want to be. This shift was described by actor Christopher Reeve, who was paralyzed from the shoulders down in a riding accident in 1995. He wrote in his autobiography Still Me that over time he “began to come up again” as one does from a dive in deep water. He gradually stopped wondering, “What life do I have?” and began to consider, “What life can I build?”

Focus on The Future

The first key to building a new life is to shift focus from the past to the future, from what is no longer possible to what can still be achieved. However severe your illness, the losses you have experienced are not total. Whatever your losses and limits, they still leave you with options and choices. By focusing on what remains under your control, you can maintain a positive spirit and increase the likelihood of improvement.

There is evidence that a positive attitude has health benefits. It is easy to see why. A positive attitude reduces frustration and stress. This attitude does not deny pain and suffering, but rather puts emphasis on problem-solving and finding what works.

Patti Schmidt described how she reoriented her life in her article “Coming to Terms with a Life I Didn’t Plan.” She writes that after acknowledging that her illness had changed her life irrevocably, she was left with the question: Now what? She made some changes in thinking to accept that there were some things that had been important that she would have to let go of. For example, she decided to accept that she wouldn’t be the homemaker she had been before. But she also decided to focus on those things she could do, rather than on those she couldn’t, adjusting her goals to her abilities.

So it may be helpful to look at your illness in a way that draws attention away from loss toward positive elements, toward what you have gained through being ill, what remains, what you can still do. Some patients even come to see their illness as a gift. Joan Buchman wrote in an article posted on this site that that keeping a gratitude journal helped her “to treasure what I have right now.” She writes that through the journal she recognized that before becoming ill “I was not on a track for happiness and peace. Because of FMS, I have had the opportunity to find out what is really important for me to live a fulfilling and meaningful life.” For her gratitude means “appreciating what you have and making the most from it. It’s about finding out that you have more power over your life than you previously imagined. ” 

Prioritize

Having less energy means doing less. Of all the things you want to do and that others expect you to do, which will you choose? There is a need to prioritize. One way to help you prioritize is by keeping for one week a chart of “How I Use My Time.” For each hour of the day, jot down one or a few words to describe how you spend your time, using categories that are meaningful to you. Here’s one list: work, housework, family, spouse/partner, friends, exercise, hobbies, TV/entertainment, time alone, rest and sleep. At the end of the week, analyze to see if your use of time is consistent with your values by rating each as “OK,” “+” (want to do more) or “-” (want to do less).

This is how one class member described her process:

I have always been a "Type A” personality. I was struggling with myself to maintained my "everything must be perfect” mentality. I was killing myself trying to live up to my own set of standards. I knew I had to make changes and listen to my body if I was ever going to see any improvement in my health. I started by listing what was important, what absolutely must be done and worked from that perspective.

Nourish Yourself

Between what you feel you have to do and the suffering imposed by illness, it is easy to let positive things slip out of your life. But we all deserve pleasure and enjoyment. If you have things to look forward to, you help yourself in an important way. The enjoyment of positive experiences reduces stress, replacing it with pleasure and building a positive sense of self-esteem.

There are many ways to nurture yourself, many forms of pleasure. It may be physical pleasure that comes from exercise, laughing, taking a bath, listening to or playing music or from intimacy. Or the enjoyment and satisfaction from keeping a garden, painting a picture or completing a crafts project. Or the mental pleasure that comes from enjoying the beauty of nature or from reading a book. Or the spiritual satisfaction of meditation or prayer. Here’s how JoWynn Johns expresses the pleasures opened to her by solitude: 

Even though I have always been a lover of the arts, in solitude I've developed a more profound appreciation of them. I respond more wholeheartedly to familiar and new literature; to the pictures, wood carvings, and pottery in my room; to the prints, photographs, reproductions of paintings, and needle art I study in books and journals; to music...Experiencing these works alone, without distraction, I find they touch me more deeply, transforming my way of seeing and inspiring my imagination.

Create New Meaning

A powerful antidote to loss is to develop new interests. Having a project to commit to or artistic pursuits offer a sense of purpose. Helping others shifts you from preoccupation with your situation and your suffering, and gives a sense of meaning. Many report finding new meaning in helping others, through participating in a support group or offering help informally. Some have started support groups or lobbied for better recognition and research funding for CFIDS and fibromyalgia. Others have taken the opportunity to return to art or crafts that languished. Taking advantage of newly-available time, they start new hobbies or resume projects they had put aside during their earlier, busier lives. Others see their illness as a challenge and find their sense of purpose in trying to understand illness and to expand their area of control. Whatever they chose, they found new ways to bring meaning to their life.

One way to bring meaning is to describe what you’ve learned about life from being ill, summarizing your understanding of how to live with long-term illness. One student in our program wrote: “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.”

You might  bring meaning to your new life by stating rules for living well with chronic illness. Here is what JoWynn Johns wrote:

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. I’m brain damaged. Had my injury resulted from a traumatic accident, neither I nor anyone else would expect me to live normally. But my brain damage is more subtle, of unknown cause. That makes it harder to realize that I am actually damaged and unable to function as I once could.

2. Accept responsibility for taking care of myself. I didn’t make myself ill. I can’t make myself well. 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? How would I make this dear person as comfortable as possible? Well, I am a dear person, and I’m also the only one who can take care of me.

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, though, instead of feeling isolated, abandoned, and lonely, I have come to appreciate solitude and silence. In solitude, I get my mind and my peace of mind back. This enables me to read, and write, and think, and do needlework, and draw--all of which give me pleasure. 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. 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. Only by staying inside my envelope, living by my guidelines, can I feel good enough to appreciate having time. This motivates me to live the way I have to.
    Although this is not the life I wanted, it’s a good life nonetheless.

Summary

Chronic illness has profound effects, changing every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. But, even though we may not have control over the ultimate outcome of the illness, there is much we can do to improve our quality of life. 

This series did not offer a cure for CFIDS or fibromyalgia. Rather it outlined coping skills that can help you improve your quality of life, if you take responsibility for those things that are under your control. I hope you can manage your illness in a way that helps you control your symptoms and enables you to improve to whatever level is possible in your unique situation. And I also hope that, even though you may not have the life you expected, you can nonetheless create a good life.

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