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Meeting the Challenges, Creating a New Life pg6

This entry is part of a series, Cambell meeting the challenges»

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.

Meeting the Challenges, Grieving Your Losses pg5

This entry is part of a series, Cambell meeting the challenges»

Grieving Your Losses
By Bruce Campbell

One of the greatest challenges of chronic illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss. And chronic illness brings with it many serious losses. We may be forced to give up our job, which provides income, companionship and challenge. We may lose friends and feel abandoned by family. We may have to give up cherished activities and groups. We may experience loss of control over our bodies. And we may have to let go of some of our goals, losing the future we had envisioned for ourselves. In sum, we experience the loss of the person we used to be.

The pervasiveness of loss presents us with one of our biggest tasks: bringing meaning to life when so much has been taken away. Dealing successfully with loss is crucial to dealing positively with chronic illness. Working through our grief can produce a double benefit. Not only are we resolving a key psychological issue in chronic illness, we may be helping ourselves physically as well. Grieving is associated with the flare-up of symptoms, so resolving feelings of loss can help control symptoms. It may produce even more dramatic effects as well. A recent study of HIV-positive men who had lost a close friend to AIDS found that those men who were able to find meaning in the loss had a significantly lower risk of dying of AIDS themselves in the following several years.

We will look at this topic from two perspectives. This article discusses how to work through loss. The next one will describe how to move beyond loss to build a new life.

Responses to Loss

There are several common responses to the losses brought by chronic illness. Sometimes these reactions are discussed in terms of the well-known stages of death described by Elizabeth Kubler-Ross in her book On Death and Dying. For most people, however, there is not a neat, orderly progression. Rather grief is a more individual process in which a person may experience some but not necessarily all of the emotions described below. Also, a person may experience some emotions more than once, or may feel two or more at the same time.

Denial and Disbelief

Receiving a diagnosis of CFIDS or fibromyalgia may produce relief, because finally you have a name for your suffering, but this initial reaction may be accompanied by shock and disbelief. Getting a diagnosis of CFIDS or fibromyalgia means being told you have a condition for which there are no consistently effective medical treatments and no cure. Common reactions include ignoring the disease by continuing to lead a busy life or seeking a cure by going from doctor to doctor or by trying special diets or treatments.

Denial can be an adaptive response, allowing you to adjust gradually to all that is different and to the uncertainty brought by the illness. Denial is a way to keep hope alive during a time in which your life has been turned upside down. But if you get stuck in this reaction, you won’t be able to face your situation realistically. The repeated unsuccessful attempts at a “miracle cure” may reinforce a sense of helplessness and despair. Self-management strategies such as pacing and stress reduction can counteract the sense of helplessness with experiences of control.

Anger

Frustration, rage, and envy are common reactions to loss and the experience of having your life changed by something over which you had no control. They are honest emotions that honor the recognition that life changed for no apparent reason, becoming much more difficult. Frustration can also be triggered by the experience of uncertainty. Symptoms wax and wane, making it difficult to plan.

Self-management strategies can reduce uncertainty. Taking regular rests, for example, can help make your life more predictable by reducing the swings between high symptoms and times of remission. Resting ahead of an event can make it more likely you can attend. A health log can enable you see patterns in your symptoms, showing you what makes your symptoms worse.

Feeling angry is normal and can have positive effects if it motivates you to work to feel better or moves you to channel your energy to help others. But anger can be destructive if it is expressed in a way that drives away people who want to help and on whom you may be dependent. Blowing-up, expressing anger by shouting or by being cruel is hurtful.

Guilt

Some people blame themselves becoming sick. You might tell yourself things like: “If only I had taken better care of myself” or “If only I managed stress better” or “If only I had paid better attention to my body.” The truth is that no one yet knows the cause of either CFIDS or fibromyalgia. It is probable that factors over which we have no control, such as genetically susceptibility, will be found to play a major role in both.

It may be helpful to remember that we live in a society that sometimes blames people for becoming sick. There is a common idea that if we eat right, exercise and have the right thoughts, we will avoid illness. But the truth is that we are vulnerable, with no control over our genes and subject to many forces we don’t understand.

Guilt can be helpful if it motivates you to take better care of yourself from here forward, but it can be a trap if you see your illness as a personal failure. Whatever happened before, you can exercise control only from here on through such strategies as getting adequate rest, relaxing to reduce stress, developing supportive relationships, accepting a reasonable load of responsibilities but not more, keeping pleasure in your life, and developing new interests.

Sadness and Depression

Depression and feelings of sadness are common in chronic illness, natural responses to loss, uncertainty, limits and the discomfort of ongoing symptoms. Depression is a response which lessens further stress or trauma by shutting down, allowing time to process what has already occurred. Depression may also be triggered by a long period of suffering before receiving a diagnosis. Years of inappropriate or insensitive treatment may engender a sense of hopelessness.

Usually depression eases over time. If it lasts, you will have a sense of despair and inertia. Several strategies may be helpful. First, using self-help techniques such as those discussed elsewhere in the first article on emotions can help you move forward, refuting the belief that all is hopeless. Second, you can work to change your thinking so that it is more realistic and helpful. See the discussion of Cognitive Behavioral Therapy (CBT) in the second article on emotions. Third, since a considerable number of CFIDS and fibromyalgia patients suffer from clinical depression, you may be helped by professional guidance and medications.

Acceptance

This complex reaction involves a combination of factors. On the one hand, it involves recognizing that life has changed, perhaps permanently and certainly for an extended period of time. Acceptance means letting go of your past life and also of the future as you had envisioned it before becoming ill. But at the same time, acceptance involves the willingness and even eagerness to build a new life. I call this combination acceptance with a fighting spirit.

This two-fold attitude was summarized by former CFIDS patient Dean Anderson, whose account of recovery is posted elsewhere on this site. He says that the key to his recovery was a certain kind of acceptance. He describes it not as resignation, but rather “an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.”

Fibromyalgia patient Joan Buchman describes a similar approach in another article posted here. She writes that while she did not choose to have fibromyalgia, she did have a choice about how to live with it. She reduced her symptoms through making lifestyle changes and developed a fulfilling life by “focusing on my many blessings.”

Both Dean and Joan came to an acceptance of the reality of their illness and the need to lead a different kind of life. They found the key to improvement lay in the combination of accepting the illness and disciplining themselves to live with hope within the limits it imposed.

Strategies for Moving Through Grief

Illness brings loss, which takes some time to process. What can help you move through your time of grief?

Use problem-solving. Respond to the emotions of chronic illness by problem-solving, as indicated in the examples above. One way to move through grief is to use its emotions as the impetus to adopt self-management strategies to remedy the situations that triggered the emotions.

Keep structure in your life. Having a routine provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss. Writer Gail Cassidy suggests that routine also offers a distraction from loss. “Do not make any unnecessary major changes in your life during times of loss, as they can further add to the existing instability and anxiety.”

Avoid stress. Having to adjust to the many changes brought by illness is traumatic. In a situation in which you are already overloaded emotionally, it’s best to avoid people and situations that add more stress. Gail Cassidy suggests you “stay away from negative people and situations that trigger negative emotions.”

Acknowledge loss. Some people report they found it useful to make a public declaration of loss. One person in our program wrote a Christmas letter to friends to explain why they hadn’t heard from him. The letter said, in part: “I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before.” He reports writing the letter helped him accept his limits and, paradoxically, increased his resolve to improve.

Respond positively to self-pity. Almost everyone with chronic illness occasionally feels sorry for themselves. It’s not surprising that we would sometimes feel overwhelmed by emotions, given the losses and stresses we experience. Here are four ideas about how to fight back.

1. Recognize self-pity is a part of serious illness: Just as symptoms wax and wane, so do emotions. Acknowledging that self-pity is happening can take some of its power away. You might say something like “Oh, there’s self-pity again” or “I’m feeling sorry for myself.” Also, it can help to say consoling things like “I’ve felt this was before and it’s always blown over, so probably it won’t last this time either.”

2. Rest: Strong emotions are sometimes triggered by fatigue and other symptoms. In those instances, rest may help alleviate both physical symptoms and emotions.

3. Connect with others: Reach out via phone, email or in-person contact. Sometimes just being in touch can change a mood. At other times it helps to have your mood acknowledged.

4. Help others: Shift your attention off yourself onto what you can do for your family, friends or others in your life.

Meeting the Challenges, Strengthening Your Ties pg3

This entry is part of a series, Cambell meeting the challenges»

Strengthening Your Ties
By Bruce Campbell

As patients with serious but invisible illnesses, we face a number of problems in the area of relationships. First, our illness is not accepted or understood. We may have trouble convincing others that we have a serious illness that imposes major limits on us. We often hear “but you look so well,” and sometimes comments like “just pull yourself together and snap out of it.” We may be on the receiving end of well-meaning but unsolicited advice. Thus, getting others to understand and accept our situation is a major challenge.

Second, our limits create problems within the family. Having less energy makes it difficult to do as much as before. Both we and other members of the family may have difficulty adjusting expectations to fit our new limits. Others may have to assume new responsibilities, which sometimes generates resentment. We may feel guilty about not doing our share. Our limits may make us uncomfortably dependent on others.

Third, limits and the unpredictability of symptoms can make it difficult to maintain existing relationships outside the family. Being ill makes it harder to get together with people. We may be unable to socialize in ways we used to. We may find it difficult to honor commitments, sometimes having to cancel at the last minute. Energy limits, in combination with worries about being accepted, can discourage us from the effort to establish new relationships.

Also, our limits can feed fears about being abandoned. When we don’t have our former energy, we may fear that we will lose the ability to take care of ourselves or that those on whom we depend may leave us.

And finally, feeling sick and being dependent makes it much more difficult to be assertive than it might be otherwise. Sometimes we adopt others’ expectations for ourselves as our own and make our situation more difficult by pushing ourselves too far. Guilt over not being as active as we and others would like can lead to our doing too much.

So illness creates various challenges in the area of relationships. The rest of this article and all of the next one offer ideas to help you respond to relationship frustrations.

Assess Your Relationships

Being ill means we have less energy for relationships, making it likely that some relationships will end or be put on hold. This is one more example of how the limits imposed by illness force us to be selective in what we do.

One place to start your evaluation might be with the fact that CFIDS and fibromyalgia can make you feel more vulnerable to those who are negative or demanding. The cost of spending time with such people may be great enough to convince you that some relationships are not worth maintaining. You may decide to keep others and rates still others as essential. In our program, we refer to this conscious and deliberate approach as relationship triage: making explicit decisions about who to include in your support network, concentrating on the more valuable or necessary relations and letting others go.

You might think of your relationships as a series of concentric rings. In this scheme, the inner ring contains the most important people in your life, typically family and closest friends. People on the outer ring are casual acquaintances. In between there may be one or two other rings of people with varying levels of importance. You may develop different approaches to people in various rings, concentrating on those in the inner ring. Relationships on the outer rings may be easier to let go of.

The approach being suggested is summarized by Dr. David Spiegel of Stanford, who writes about relationships and chronic illness as follows: “Save your energy and use the illness as an excuse to disengage from unwanted social obligations. Simplify the relationships that are necessary but unrewarding, and eliminate the ones that are unnecessary and unrewarding.”

Set Limits

Assertiveness means setting safe limits for oneself, then communicating them to others. Make clear to yourself and to others the consequences of your trying to meet old expectations: intensification of symptoms and postponed improvement. Be as specific as possible in asking for help if others offer assistance. For example, you might ask if they would do grocery shopping, make a phone call, or drive you to a medical appointment.

It can be difficult to be assertive when feel dependent and fear abandonment. If that’s the case for you, it may help to practice saying your request to yourself or someone you trust before making it to the person whose help you want. In presenting your request, it may help to acknowledge that you understand the other person’s situation. You might say something like “I know my illness makes your life more difficult and that some things I say and do may be frustrating.”

Nurture Important Relationships

Work hard to nurture those relationships that are most important to you, especially that with your spouse or partner. Research suggests that relationships are more stable if there is an emphasis on the positive, so look for the good in one another and in the relationship. A study that charted the amount of time couples spent fighting versus interacting positively (touching, smiling, paying compliments, laughing, etc.) found that relations were stable and satisfying if the ratio of positive interaction to negative was five to one.


Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. To improve communication with your partner, consider the following suggestions.

1. Pick a good time. Select a time for important conversations when both you and your partner will be at your best. Find a time when you will not be distracted by pain or brain fog, and when your partner can give you good attention.

2. Be grateful and respectful. Treat your partner with respect, acknowledging their support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in family problems.

3. Practice problem solving. Focus on the difficulties caused by the illness, rather than personalizing problems. Think of “gripes and solutions”: describe complaints, then discuss possible solutions. Work on only one or two problems at a time.

4. Test your understanding. From time to time, check whether you have understood the other person’s position by restating it in your own words.

Do Your Part

Our illness affects those who are close to us. It alters dramatically the financial circumstances of most families, forces radical changes in how household tasks are divided up, and drastically reduces the number and scope of activities the family can do together. A healing approach to relationships can begin with our acknowledging to ourselves and then to others how our illness and behavior affects them.

Just like patients, family members too can feel isolated and helpless. They may experience loss because their dreams, too, are put on hold. And they may feel abandoned or feel frustrated at the restrictions on their lives. The unpredictably of symptoms and mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion.

Acknowledge that your illness creates problems for others, for example having to take on additional responsibilities. Express your appreciation for their efforts. Acknowledge that the illness can make you unreliable. Out of respect for other people, warn them that you might have to cancel on short notice. To help maintain the relationship, tell them that you value them and that backing out does not mean you don’t like them.

Take responsibility for the problems your illness creates for others. For example, if your illness makes you moody, make a list of things you can do to help yourself feel better. When you are feeling irritable, you might listen to music, take a walk or have a brief rest. All can help you avoid inflicting your moods on others.

Educate Others (Selectively)

Patients are sometimes successful in educating others about their illness, but most put limits on their efforts. If you think educating others about your illness would help them to be more understanding and supportive, you might talk with them or give them something to read. The CFIDS Association of America has a pamphlet titled “For Those Who Care,” which is available from them and also can be downloaded from their web site: http://www.cfids.org. The Arthritis Foundation has a similar brochure for fibromyalgia. One person in our group gave the CFIDS pamphlet to her husband and children, asking that they read it as their birthday present to her.

Patients who have tried educating people in their lives report that this approach often requires patience and is not always successful. They have experienced positive responses at times but have also concluded that some people may never understand the illness or be sympathetic. One student said, “When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I’m more selective about who I approach and I’ve accepted that some may never understand.”

Embrace Solitude

Serious illness often forces people to spend much more time alone than before. While some find solitude frightening or boring, others see their illness as providing an opportunity to develop new solitary interests. Recognizing that they will be spending less time with people than before, they have seen the situation as a chance to do things like reading and art work that they didn’t have enough time for earlier in their lives. See, for example, JoWynn Johns’ article “In Praise of Solitude.”