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Rethinking Usefulness

by Susan Dion
(reprinted from The Mass CFIDS Update Fall 1999)

Many people with Chronic Fatigue Syndrome (myself included) have suffered through heavy loads of guilt in conjunction with the illness.  This guilt is often difficult to separate from the deep sorrow accompanying the many losses sustained by the patient.  The losses go far beyond the former healthy body; they often include loss of employment, loss of income, loss of intellectual acuity, loss of former expectations, loss of social life, and so on.   Indeed, the illness results in the loss of varied parts of the self.   In all of this confusion, there is the complicated issue of guilt.   For many people with CFS (PWCs), this reaction kicks in sometime in that first year or two of illness generally after one has experienced many months of debilitation and gradually comes to understand that a return to work and the healthy self may not be available by the next sunrise.   For a very long time, I clung to the hope that I'd wake the following morning and be healthy once more - similar to any bout of flu.

Guilt is an awful feeling.  It never feels right; it's awkward, defeating, and miserable.  A sense of guilt is generally counter-productive in terms of emotional balance.  It increases feelings of sadness and hopelessness.

The guilt relates to the losses. For example, one may feel guilty for letting others down.   Disabling illness distorts prior arrangements with loved ones, employers, friends, and ourselves.  Guilt may relate to the necessary financial contribution one formerly made, which now is lost to the individual and his or her family.  One may feel guilty because he or she can no longer parent adequately, let alone do so in the manner previously enjoyed.  Patients may feel useless because they cannot easily manage simple basic household tasks.  One may feel guilty about not carrying one's chores and making others bear an extra burden.  There's much more to guilt, of course.  Some folks may actually blame themselves for contracting the illness.

Regardless of the nature of each person's guilt, there are ways to get beyond it.  Self-talk helps to defuse the destruction of guilt.  This might be called cognitive self-therapy as you rationally walk yourself through the conundrum.  Seeking assistance through support groups, books, prayers, and professional counselors may help too.  However, one of the biggest steps may be to rethink usefulness: reconsider your definitions of what it means to contribute and redefine your ideas about what makes your life worthwhile. 

My daughter and I were talking about another person with CFIDS someone struggling with the turbulent emotions engendered by crushing sickness and multiple losses in those early months.  My then sixteen-year-old Raena (who is strong and healthy, but lives with asthma and coped with epilepsy) said, "Yes, that person is feeling useless.  No one wants to feel useless."  What an astute comment!   For most people living with debilitating illness, the fear of being or becoming useless is potent.  Each individual needs to redefine usefulness within his or her current limitations.   Rethinking and rediscovering a new usefulness can help diminish, or even erase, the misplaced guilt.   Feeling useful is crucial to overall well-being and helps sustain the patient through the struggles of daily sickness.

We are profoundly useful simply by caring in the most nominal of ways for others; our kids, our partners, our pets, our parents, our siblings, our friends, our neighbors, and more.  Even though we have to radically change the way we handle these relationships, caring is one of the most important, most useful thing we can do to make this a better world. 

We can even extend it beyond our close-knit circle. We can reach out to another patient, perhaps with a monthly phone call or letter.   We can advocate (yes, even from bed!) for causes of concern to us, such as welfare reform, school issues, disability concerns, peace, or controversial state and national agendas. We can try to perform random acts of kindness in whatever seemingly minuscule path that may open to us.   We can give in some minor way to charitable efforts perhaps by addressing a few letters for the Heart Association, sending two dollars to the local women's shelter or making a few brief, staggered phone calls to ask others to give to an important program.

Finally, we can be especially useful by patiently advocating and educating others about CFIDS and broader topics related to illness.  This last type of usefulness is a very powerful tool for both individual and collective reasons.  Whether one writes a three-sentence note to a senator urging more research money for CFIDS, or sends an information packet to a doctor, or volunteers as a patient in research studies, to list but a few - by educating and advocating, we can contribute to change.  The tiniest of efforts makes a difference.  It is empowering.

There are even bolder steps undertaken by some patients, often with extreme difficulty.  For example, several individuals have initiated thoughtful and inspiring publications, giving patients a forum to assist each other through the written word.   Varied local, state, and national CFIDS groups have been founded by debilitated, but brave patients.  Their contributions are enormous.

I was deeply moved by one very ill PWC who told me of her effort to do something useful.  This courageous, unselfish woman volunteered to hold cocaine-addicted newborns at an inner-city hospital.  She thought that it might be a good way to contribute her caring.  After all, how hard could it be to sit and rock a tiny, ill infant for one-half hour?  After getting her doctor's and the hospital's approval, she started this task.   Sadly, after several attempts, she realized the effort was too difficult.  Her already intense flu symptoms were aggravated to intolerable levels.   But, she tried and she gave.   And she has continued to rethink usefulness.

Not one of us has to give in these extraordinary ways, of course.  There is an element of the sacred in caring for others in the most ordinary ways.  One kind word to a person is an enormous gift.   Giving to others in small ways contributes to a kinder world.

Most of all, don't forget to care for yourself in a kind and generous manner.  Take some quiet time.  If the guilt over what you can't do is still overwhelming, try some slow, gentle efforts on rethinking usefulness. Consider what you can do to care for and give to others.  The world is a large place with many cruelties.  Regardless of how many constraints we face due to pain and overwhelming sickness, we can continue to care.  Indeed, we must.

Susan Dion has been ill since March 1989.  She is the author of a booklet, "Write Now: Maintaining a Creative Spirit While Homebound and Ill" and has published several articles in The CFIDS Chronicle.  A version of this essay was first published in The National Link and on About.com's CFIDS web site at (http://chronicfatigue.about.com).