RETURN TO TABLE OF
CFIDS, Change and
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
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
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
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
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.
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
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
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
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