CHRONIC FATIGUE SYNDROME STILL MISUNDERSTOOD?
PATIENTS SPEAK OUT.
In the late 1980's, I was diagnosed with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) and Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS).
By the early 1990's, I was writing for "The CFIDS Chronicle," the journal for the CFIDS Association of America, Inc., based in Charlotte, NC, and started by Marc Iverson for the purpose of research, patient advocacy, and public awareness. I wrote a column for the Chronicle called "Dancing with the Serpent.," for the purpose of helping others sufferers take heart and learn ways to make life bearable.
I placed my own advertisement in "The CFIDS Chronicle" for letters, artwork, stories, poems, and essays created by people with CFIDS (PWC's) and the people who loved them. I didn't really expect much. I was bedridden with the disease, and I had a computer and printer in my bedroom left from my technical writing business. With no warning, the letters and goodies began to pour in from all over the country. I used these materials to put together a book called, Shadow & Light: The Voice of CFIDS, used by The CFIDS Association of America, Inc., to raise money and to educate newly diagnosed patients.
Because of the submissions to this book and my close interaction with patients and advocates, I feel I may have an insight to the misunderstandings of Chronic Fatigue Syndrome through the eyes of those who suffer every day to get through the terrifying myriad of symptoms.
I may use their voices (anonymously) to portray misunderstandings that remain to this day, in spite of the incredible amount of work done by the Centers for Disease Control (CDC) and the National Institute of Health (NIH) to remove the blinders from the eyes, minds, and hearts of the medical community and of society. My special thanks go to those who share their intimate experiences regarding Common Misunderstandings of Chronic Fatigue Syndrome and the pain caused by those misunderstandings. My thanks to you for caring.
Misunderstanding: "CFS must not be too bad if you walk; you could be in a wheelchair."
Patient Response: "The Invisible Chair"
"What about those whose limbs are intact
Whose hearing and sight still remain
But whose lives are crippled by overwhelming weakness
Whose bodies are wracked with endless pain . . .
What about the many unfortunate disabled
Who are not shown such kindness and care
Whose lives are tied and bound each day
to a real . . . "Invisible Chair" . . . " D.L. in Massachusetts
My Response: Many people with CFS, including myself, spend the majority of their time (if they get out at all) using a wheelchair. We rarely see those sufferers who cannot walk more than a few feet unaided, then fall exhausted for hours, days, sometimes longer.
Misunderstanding: "Just rest and you will feel better."
Patient Response: "Wanted: New Life"
"I most long for rest. It's so frustrating to never feel rested after a nap, after a vacation, after a rare good night's sleep. There is no rest, so that each day seems like drudgery or misery. As wonderful as physical rest would be, I think I can safely assume that people with CFS (PWC's) need hope anymore." S.M. in Virginia
My response: Rest does not help a great majority of the people who suffer from CFS, but exertion can be dangerous. Patients must take care to find that middle road for themselves, as no two patients are the same anymore than any two fingerprints are the same.
Misunderstanding: "There is nothing wrong with CFS patients that cannot be cured on a psychiatrist's couch."
Patient Response: "Letter To My Physician"
"I left Dr. Iknowall's office exactly as I had entered, a 32-year-old woman who spends all day in bed, inert and stunned by illness. When I graduated from law school, I landed a job as a tax attorney with one of Boston's most prestigious law firms. As a working attorney, my daydreams blossomed like perennials. I now envisioned a husband, a colonial home, and my very own child. Yet my health-care aide drove me here today, due to blurred vision and poor concentration. I can no longer drive my car. You ask me if I really want to get well and go back to work. I have a compelling desire not only to get well, but to enlarge my life to its most encompassing peripheries. To you, I am just another patient or source of money for your backyard swimming pool. But to me, I am my only life, suddenly thwarted and impaired. My shelves are full of books I can no longer read. You may not like me; I am a medical jigsaw puzzle that cannot be easily solved. I haven't given up on myself. Don't give up on me. I believe there is a divine spark in all of us. I will someday find meaningful work that will not hurt my body. I will find my place in this world. Dreamer of the girl I was, richness of the woman I am, I lie in bed waiting for the future. Before I go to sleep each night, I pray, "How can I still make my dreams come true? Make my dreams come true . . ." - F.A. in New Jersey
My response: This patient is no longer with us. Like so many patients with CFS, she did not survive surgery. The loss is most painful to her husband and the children she adopted.
Misunderstanding: "You'll be fine if you just stop feeling sorry for yourself."
Patient Response: "Dear Former Husband"
"It has been three years since you sat at my bedside to say you were leaving me. You said you wanted someone with more to offer. Like a car crash in slow motion, it is happening to you and all you can do is watch for what seems like an eternity. But the event of this illness, this accident, will not be over. I sleep with my phone at my bedside, its stretchy umbilical cord connecting me to a world I'm not able to participate in. My friends move mainly away. To jobs, husbands, work, travel. I feel akin to ill and aged people. It is a distinct experience where this commonplace world collides with the mystery of the next. From the boarding house across the way, the old men and I catch each other's eye and see a mutual recognition, a knowing. We look away and continue as best as we can." K.W. in Massachusetts.
My response: Sometimes the misunderstandings faced daily by friends and family become pervasive, and a patient finds him or herself alone. Years follow years. People enter the lives of the chronically ill, only to move on when things become too difficult.. In the case of this woman, an artist, writer, and therapist, when the pain of her body and the pain of her aloneness met, she took her own life. This is a common and very tragic end for many sufferers of Chronic Fatigue Syndrome.
What is a misunderstanding? It is a building block of misinformation that builds on more misinformation until there is a wall between the chronically ill person and the world. There are too many misunderstandings to list. Some come from doctors, some come from family members and spouses, others come from strangers. The result is always pain and frustration. "If only he or she would listen . . ." We say it repeatedly. Why won't they listen? Some people do. Other people just are not wired that way.
The results can be devastating, cruel, even deadly. If you meet one of us, by chance or design, set aside what you think you might know about Chronic Fatigue Syndrome, and open your mind and your eyes and listen to our stories before you pass judgment. We live with this every day, day in and day out. We can't leave it at home to go to the store Chronic Fatigue Syndrome baggage goes with us. All we ask is not to add your misinformation to the baggage we already are forced to carry.