How a CFIDS Teen Found Happiness and Success in a New High School

By Kate Anderson, M.Ed.

Originally published in The CFIDS Chronicle, July/August 1998

"They let me sleep in the van."

These are the words of Karen, a 17-year-old high school student, diagnosed a year ago with mild, insidious-onset CFIDS. She was talking to her mother about her new alternate school program. As she reassured her mother that she could manage the weekly field trips, a new confidence and sense of security beamed from her face. After a long battle seeking help for symptoms that began in the sixth grade and culminated in her failing all subjects in the tenth, Karen had finally found understanding in the educational system. She was supported by a team of accommodating teachers and a group of accepting classmates. She was a happy girl once again.

Karen dropped out of school halfway through the tenth grade. "She slept for two years," says her mother, in tears. "She missed out on two entire years of growing up. She might as well have been in a coma." Even now, neither her parents nor her doctors know how much she needed that sleep to recover from the insults of CFIDS and how much was depression-related, an escape from a punitive school system whose response to her frequent illness-related absences was always the same: "Find out from a classmate what you missed. And catch up."

Of course, catching up would have been difficult for a student with no learning difficulties. For someone with measurable problems with information processing, it was impossible. Finally, after repeated futile attempts by her parents to obtain a diagnosis - or at least some understanding - things came to a head. A school counselor described Karen as having "an attitude problem, related to too much focus on illness in the family." Karen couldn't take any more.

Beaten down by illness
This 15-year-old, who had always been a sunny, cooperative child, was simply beaten down by her illness and the school system's response to it. At Christmas time, after receiving her failing grades, Karen broke down to her mother in tears: "I'm not smart any more." In her diary she recorded: "I have the hearing of an 80-year-old. I am awake until 5 a.m. I can't remember my own phone number. I don't know what's happening to me. I get sick all the time. I am so very, very sensitive. I cry and laugh at the same time. Do I have multiple personality disorder, or something? Help me, somebody, before I kill myself." Then one day she carved a cross on her wrist.

Her terrified parents sought help once more, this time armed with Dr. David Bell's book, A Doctor's Guide to Chronic Fatigue Syndrome, and literature from The CFIDS Association of America. Other medical problems and primary depression were ruled out. Some tests of immune function, while not diagnostic, were suggestive in showing some abnormalities which were consistent with those found in research on other CFIDS patients. A psychiatric evaluation, a psychological assessment, an examination of family dynamics and a careful history cleared up the picture -atypical, insidious-onset CFIDS, complicated by depression secondary to CFIDS. It was not a difficult diagnosis to make as long as the diagnostician read the research, listened to the history and paid attention to the sequence of events, much of which was documented in Karen's school report cards. The story was all there.

Eager to be normal
Today, with the impossible expectations replaced by encouragement and emotional support at school, Karen has managed to attend school almost every day since being accepted in the program. She confesses to spending some parts of the morning with her head on the desk, but she has completed a modified tenth grade with an "A" average.

Anxious to share the independence enjoyed by her healthy classmates, Karen takes the bus back home after a relatively short school day, then naps for two hours. In the evening, when her "window of energy and alertness" arrives, she appears to be a perfectly healthy, normal adolescent and watches TV, talks on the phone or goes to dance class. On weekends, after sleeping until noon, she sees her friends, dates and goes shopping. Now in the eleventh grade, she is keeping up well with her schoolwork, with a greatly reduced course load and curriculum structured for youngsters with learning disabilities. She is conscientious about completing her work and is frequently commended for her sensitive and skilled creative writing.

It's easy to understand that Karen's CFIDS, emerging slowly over several years, is described as "insidious onset." But it is also "atypical," because she was able to continue with dance classes, her greatest joy, in spite of her illness. While evenings spent at dance class were followed by mornings in bed, headaches, flu-like symptoms and almost no attention span, she was not able to make the links in her own mind between her evening exercise and her daytime losses. Her parents, terrified of pushing her into deeper despair, chose to let her keep the beloved dancing knowing that it might mean that she would sacrifice school. Karen was winning prizes at dance competitions and was building a new identity around that success. Describing herself as the "underachieving child of the family," she wrote a story about being "unfocused and unmotivated." Her puzzled parents had always encouraged her and never criticized her declining school achievement. It was clear the self-punishing messages were coming from her experiences in school.

Making adjustments
Now only a year behind her peers academically, Karen is roused in the morning by a loving father who drives her to her new school program. Her parents have given up following the standard clinical advice insisting that an adolescent be responsible for waking up on her own. Sometimes it takes five wake-up calls to get her up. They have also long since abandoned the time-honored clinical wisdom of "maintain attendance at all costs." On the contrary, Karen's parents encourage her to stay home and rest after a day of stress or exertion or a period of feeling especially unwell. You see, Karen's mother has CFIDS, too.

"I understand this. When you take away the stress to fit into other people's timetables," her mother said, "you conserve energy. That energy enables you to perform better and come closer to meeting those expectations. It's the paradox all of us with CFIDS live with. People need to understand how this works." She added, "The only thing I am grateful about in having this dreadful illness is that it helps me understand Karen and to know how to help her. I thank God for that. What might we be doing to her without that knowledge?"

Karen had been taking 20 mg. of Paxil daily with no benefit for some time when her doctor decided to add 10 mg. of Elavil at bedtime. It immediately enabled Karen to fall asleep before midnight. Although this is not enough medication to treat a primary depression, Karen's depression has disappeared. However, her need for extra sleep and her post-exertion fatigue have persisted. Her family is enormously relieved that Karen appears to be slowly recovering, or at least coping well with CFIDS. But they grieve the losses their daughter has suffered.

How many others need help?
They wonder, too, how many young people like Karen are there in our schools, failing and becoming depressed and failing some more? How many of them fool everyone by looking well and keeping up with dancing or a sport or some other accomplishment that, to those who think simplistically, proves they don't have CFIDS? If it has taken so long to get even a modicum of understanding of severe CFIDS in adults, how much longer will it take for the medical and educational systems to understand the disorder - and its range of presentations - in young people? Karen's parents feel helpless to move things faster so that other young people can receive the understanding and help they need. "I know that everything hinges on research," said her mother. "But it will take another decade to get new knowledge into the school system. I am not optimistic."

In spite of their despair, the family struggles on, valiantly finding their own solutions to the daily problems that CFIDS presents. Friends and relatives are beginning to get the picture. "What's the prognosis?" a friend asked, noting that Karen's mother was now in her 16th year of the illness and still disabled. "I've no idea. But whatever it is, we will always be there to support Karen. That's what makes this tragedy bearable to me. I know that, with all the support and real understanding I have had, I have been able to lead a satisfying, while limited, life. So can Karen. We're not going to let CFIDS beat us."

On a recent Sunday, Karen won two second place prizes in her solo dance performances. She spent Monday in bed. On Tuesday, she went back to school. On Wednesday, she went on a field trip with her teacher and classmates. They let her sleep in the van.