In 1998, I wrote a book on the topic of change. It includes a discussion of the nature of change, how change affects us, why we fear it and how to manage it.

This subject is especially important for people with CFIDS (PWCs). The illness causes major life changes that force us to adapt to our new situation. CFIDS also involves an extensive number of symptoms that constantly change. Understanding how change affects us psychologically can help PWCs, their caregivers and supporters to better understand and deal with the disease.

Change is loss
A major part of adapting to change is coming to terms with loss. Change and loss are closely related; adapting to change also means adapting to loss. Almost any significant change we experience in life — even a positive one such as marriage — involves a loss. Change means leaving something known, old or familiar behind (i.e., in marriage one’s independence, identity, lifestyle) and dealing with something new and different (a partnership, new identity and new responsibilities). Adapting to change means facing, accepting and dealing with the end, dissolution, breakdown or loss of something and then making the transition to something new and unfamiliar.

Losses must be mourned
Just as we need to mourn the loss of a loved one who dies, we must go through the process of mourning all significant losses in our lives. When we experience the physical loss of a thing, person or ability, we are also experiencing the loss of what it meant to us in our lives on an emotional level, including all the experiences we had with it in the past, the significance or purpose that it had in our lives and the structure that it gave to our lives. Psychologically, this is a major adjustment to make. Acknowledging and accepting losses and experiencing and dealing with all of the painful and uncomfortable emotions that result from them is a psychological necessity and a crucial part of the process of adapting to change.

Grieving helps people adjust and enables them to let go. As we adapt to change, we must also restructure our view of ourselves, our lives and the world so that we can move on. The old way must be left behind so that we can rebuild and restructure life according to the new reality that change has brought us.

Few people must deal with the number and range of losses that PWCs face. With the overwhelming number and ongoing nature of the losses, many PWCs, especially those who are more seriously affected, can find themselves in a state of continuous grieving. That is one reason it’s such a difficult disease to live with.

Living with loss
What can you do to minimize the negative impact of losses?

• Recognize and accept that CFIDS is a disease of loss. Formally acknowledging the fact that you will probably have to deal with losses on an ongoing basis, and that they are part of the disease process (just as physical symptoms are), will help to soften the impact of the losses when they occur. Being psychologically prepared for them can also keep you from sliding into a serious depression. Accepting loss does not mean you have to like it — but it does prepare you to deal with the reality of it.
• Learn about the grieving process. PWCs already know what it’s like to be in a state of continuous mourning. But formally learning about loss, grief and how it affects people will help you adjust. Self-education can help you understand why you feel the way you do, can confirm that your behaviors and thoughts are normal and can make you aware of things or situations that can help or hinder adaptation to loss.
  
  Many books address the grieving process (in addition to my own), including: “Living Through Personal Crisis,” by Ann Kaiser Stearns (Ballantine, 1984); “The Courage to Grieve,” by Judy Tatelbaum (Harper and Row, 1980); and “Letting Go With Love: The Grieving Process,” by Nancy O’Connor (La Mariposa Press, 1984).
• Maintain structure. Keep to a regular routine when possible. This provides a sense of stability, familiarity, normalcy and continuity in your life to counteract the feelings of emptiness, disorientation and uncertainty caused by losses. Routine also provides a distraction from losses. 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 — particularly emotional stress. People in a state of continuous grieving are already emotionally overloaded. Events or people that bring about more stress make coping more difficult, if not impossible. Stay away from negative people and situations that trigger negative emotions.
• Seek the support of others. Part of the grieving process involves discussing feelings and emotions regarding loss with others you can trust. Doing so with family, friends and spouses can be very beneficial. However, because of the ongoing nature of losses in PWCs and the need to talk about them on a long-term basis, you may want to consult a professional therapist or counselor if you are well enough to travel and keep appointments.
  
  Talking to a professional has several advantages. First, they are familiar with loss and the grieving process and can provide you with suggestions and advice, as well as support and encouragement. Second, you can allow yourself to let out all of your feelings (anger, frustration) because the therapist is a stranger and there is no need to hold back or avoid the discussion of certain matters. Also, because losses will need to be mourned over a long period of time, you will not tire out or overwhelm friends and relatives who you count on for support.
  
  Writing about losses and the emotions associated with them in a diary or journal can be very therapeutic for PWCs as well.
• Stay positive. Try to keep a positive attitude through it all. This is difficult to do when experiencing loss, but it’s essential for emotional stability. Use positive self-talk to prevent negative thoughts from getting out of control and to focus your thoughts on the positive — even if it is on the fact that things can’t get any worse.
  
  Don’t pretend that nothing is wrong. Just don’t allow your inner voice to dwell on negative thoughts.
    
  For example: Instead of being upset at having a difficult day, say: “I’m glad that I’m getting this bad day over with today. Maybe tomorrow I’ll be better.” Or: “I can’t do this today, but I can do something else instead.” These statements turn negative thoughts into hope for something better.

Losses change lives
Loss forces us to change the way we think and behave. It teaches us how vulnerable we are. And it makes us re-examine our views of life and the world from a new perspective.

Ironically, it is from these difficult experiences that we are able to gain so much insight into life. CFIDS profoundly affects the way we look at life and what we consider to be important. No PWC will ever see things the same way as he or she did before the illness. I have said that few people suffer from the number and extent of losses that PWCs do. Conversely, few people ever attain the extraordinary level of personal growth that results from the knowledge and wisdom that these losses and adversities teach us.

So as we wait for improvement, recovery and a cure, we can look to the future with confidence. We know that the invaluable wisdom and enlightenment we have gained from our experiences will always be there to guide and sustain us though life. And that is something that cannot be lost or taken away.

Gail Caissy, EdD, is a PWC who lives in Clarence, N.Y. She is the author of “Unlock the Fear: How to Open Yourself Up to Face and Accept Change” (Insight Books, 1998).