PLEASE LISTEN TO WHO I AM
The faces of chronic fatigue syndrome have names. Names have fingerprints unique to the universe and it is my hand, my unique self that must deal with the difficulties of living with CFS. I cannot speak for others and each of them cannot speak for me. We are lumped together and labeled for research purposes, but I am about much more than a sick body.
As you read, keep in mind that I write about things that matter to me. The tone and style of each piece reflects my individuality. Things are said here that will never be spoken to a physician, but a physician might learn a great deal about human endeavor by reading each narrative.
Because of the "status" of our "syndrome", I am often caught in what feels like a case of mistaken identity. Medical records, reports from specialists or from social security caseworkers read like they are about someone else. Malingering. Narcissistic. Longstanding psychiatric problems. Motivated by secondary gain. I wonder how I could be judged so harshly.
"But... but... I started work when I was sixteen. I put myself through college. Do you know about my workshops at conventions around the state? Do you know that I worked so many years sick that my mind came to associate my building with fatigue? Do you know that after I quit my career, the sadness was so deep that I could not enter my workplace free from grief until three years later? And do you know that I have felt triumph despite the illness because I have become strong?"
Please listen to who I am.
The Faces of CFS was compiled by Pat Fero in Spring 1996. Authors retain rights to their own material for future publication. The compilation is copyright Ó 1996 by the Wisconsin Chronic Fatigue Syndrome Associations, Inc. For additional printed copies send a check or money order for $5.00 to :
Wisconsin ME/CFS Association, Inc., 747 Lois Drive, Sun Prairie, WI 53590. Phone (608) 834-1001