Chronic Fatigue Stages of Grief

Is it possible that people with Chronic Fatigue Syndrome (CFS) go through the stages of grief? While grief is usually associated with the death of a loved one, it can occur after any loss – and certainly the losses you experience with CFS are significant. You lose the “old” you: You are forced to give up many of the activities you love. You may need to quit working. You might find your relationships suffering. Many of your dreams for the future now seem unlikely and unattainable. You even feel a loss of control over your own body.

Yes, people with CFS go through the stages of grief. It is challenging to come to terms with our new situation. But, the ultimate goal of grief is acceptance, an ability to live – and thrive – within our new circumstances.

1. Denial is the first stage of grief. We don't believe we are significantly sick. We believe that our symptoms are simply signs of aging. We may be fighting our own bias towards the stigma of CFS. We doubt ourselves and wonder if we're crazy, or people are right and it's “all in our head.” We minimize the effect our symptoms are having on us. We deny the reality of CFS in our bodies and deny the need for change. We try to “push through” and maintain the same activities at the same energy level as before – leading to the “boom bust” cycle, crashes and relapses, and a worsening of our condition.

2. The next stage of grief is bargaining. We bargain with ourselves, our God, or our universe: “Let me get well, and I'll … (fill in the blank).” We promise that we will do all those things we now see were lacking before. We compare ourselves to others who are not ill. “If I were well, I would … (fill in the blank), too.”

3. Anger is one of the most powerful emotions of grief. With CFS, there is so much to be angry about! We feel angry at the betrayal of our bodies. We feel angry that doctors are unable to explain what is wrong with us, that it takes so long to get a diagnosis, that there is so little to be done once you are properly diagnosed. We are angry that we can't be who we once were, that we can't do the things that we love, that we can't work in the job we chose. We feel angry with people who do not understand, who are unwilling to learn and unwilling to help. We feel angry that there isn't more information available, that there isn't enough research being done or enough progress being made. We feel angry that we can't be with people. We feel angry as we watch the world go by. We feel angry with God.

You have every right to be angry! Anger has its purpose and can be beneficial. It can motivate you to take control of your health, to let go of unhealthy relationships, to make the necessary changes to improve your important relationships, and to defend yourself while educating others about CFS.

In our society, we are not taught to express powerful or negative emotions. We are told we need to “stay positive.” It takes great courage to confront and feel all the emotions that come from CFS , even the negative ones. It is important to find healthy ways of dealing with such strong feelings, so that you do not push your loved ones away when you most need them.

4. The next stage of grief is depression. Depression may be triggered by a long period of suffering prior to finding a diagnosis. It can also be caused by years of inappropriate or insensitive treatment that has led to a feeling of hopelessness. It is a natural response which lessens further stress or trauma by shutting down, allowing time to process what has already occurred.

Most people recover from depression over time on their own. There are things that you can do to help you through depression. The key is to start with small goals and stay focused. Many of the lifestyle changes that help you manage CFS will also help you manage depression. Getting proper sleep , eating healthy , exercising , and reducing stress are all helpful. Develop and rely on your personal support system. You may feel like pushing people away, but you really need them now. It's also important to be gentle with yourself.

Pamper and take care of yourself! Write down a list of things that you like to do. Promise yourself you will participate in one enjoyable activity each day, whether you feel like it or not.

Reach beyond yourself and do something for someone else. You deserve a break from the trials you are going through, so let go and think about others for awhile. It is easy to think, “What can I do?” with the limitations of chronic illness. However, you would be surprised at the many tiny things you can do that make a big difference to others .

Above all else, if your depression does not improve or worsens, please consider professional help! Cognitive Behavior Therapy (CBT) has been proven to help CFS patients through such difficulties. Your doctor can help you find the right treatments for you.

5. The final stage of grief is acceptance. It is important to understand that acceptance is not giving up; in fact, achieving acceptance is very empowering. It can put you in a position to make the changes that are necessary to recover from CFS. Acceptance means recognizing that your body has limits and learning to live within those limits. It is embracing a slower pace that moves you forward instead of pushing you back. It is not just letting go of the “old” you – it is creating a “new” you around those things that are most important to you.

Sources: “Finding Strength in Weakness” by By Lynn Vanderzalm, David Scott (INT) Bell; “Meeting the Challenges of Long-Term Illness: Grieving Your Losses” , CFIDS and Fibromyalgia Self-Help.

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