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Grieving Your Losses

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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 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 ME/CFS 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 either condition 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.

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.

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 ME/CFS or fibromyalgia. It is probable that factors over which we have no control, such as genetic 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 in this article on depression 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 ME/CFS and fibromyalgia patients suffer from clinical depression, you may be helped by professional guidance and medications.

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 ME/CFS patient Dean Anderson, whose account of recovery is posted in our Success Stories section. 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 Success Stories article. 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.