Tag: case history

“Arnie’s Story”: A Child’s CFS, Misdiagnosed as Munchausen’s by Proxy

This ME/CFS patient case history is excerpted from Dr. Bell’s book Faces of CFS – Case Histories of Chronic Fatigue Syndrome, published in August, 2000. Each case illustrates a different aspect of the illness that he has studied since the ‘Lyndonville Outbreak’ of 1985-1987. 

Reprinted with the kind permission of ProHealth: 4/27/11

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ARNIE’S STORY

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie… because everything about Arnie was typical of CFS – a disease his doctor did not believe existed.

Karl Friedrich Hieronymus Baron von Munchausen was a German “soldier, adventurer, and a teller of tales,” according to one description, who lived from 1720 to 1797. His fantastic lies about his daring and conquests were so notorious that their memory survives to this day as German lore.

Medical science has borrowed from this ancient character’s name to categorize the patient who engages in equivalently tall tales, all having to do with physical illness. When a parent or caretaker makes up bizarre tales concerning the health of their child, doctors call it Munchausen’s syndrome by proxy.

Sometimes the parent intentionally harms their child, by poisoning for example, to create the symptoms. Experts suggest the parent is motivated by a need for attention, and get it they eventually do, one way or another.

Although it was the Baron who proved himself capable of such outrageous falsehoods, women are more vulnerable than men to being suspected as having Munchausen’s syndrome. And women are suspected of Munchausen’s syndrome by proxy when doctors are unable to find a simple answer to a child’s ills.

This is because women typically take the dominant role in helping children through the maze of doctor’s visits, hospitalizations, and treatments when children fall chronically ill.

Every year, parents in this country and abroad face court hearings before judges and juries in which they are subsequently found guilty or innocent of intentionally harming their child due to Munchausen’s syndrome by proxy.

Depending on the circumstances, the prosecutor, representing the state, may add fraud to the charges. Usually, the mother’s psychological competence becomes an issue of enormous significance in such a trial. If a child has been judged to have Munchausen’s syndrome by proxy by a psychiatrist serving as the state’s expert witness, the mother may face the removal of her child from her household, usually into foster care, as well as criminal charges.

The notion of a mother deliberately hurting her child is difficult for most of us to comprehend. Nevertheless, for some years now, Munchausen’s syndrome by proxy has been accepted by the medical profession as bona fide, if somewhat baffling. And there is no question that it occurs. Hidden videotapes in hospital rooms show parents either injuring their children, or doing things that make it appear that a child is ill. What a world….

But, because this does occur, physicians have grown suspicious, particularly when confused by symptoms in the patient they treat.

With this in mind, imagine what might happen when a mother whose child suffers from an extremely complex, misunderstood – even overlooked – chronic disease, becomes an outspoken advocate for that child, struggling to explain her son’s illness to unsympathetic doctors and suspicious school officials.

Imagine the situation from the perspective of the sick child, who can barely articulate to his friends, much less to an attorney or a psychiatrist, what ails him. Imagine how, over time, these quiet struggles can escalate, thrusting mother and child into a firestorm of accusations by authorities of all stripes, as they attempt to salvage their dignity and even their right to remain a family.

A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie.

Arnie was ten when he experienced the onset of CFS, but for much of his brief life he had suffered a seemingly endless succession of colds, allergies, sore throats, stomach aches, and headaches.

The doctors his parents took him to see somehow failed to notice a pattern of minor infections that, in retrospect, strongly suggested Arnie may have had a medical problem for some time before the symptoms suddenly escalated.

Instead it was attributed to an over-anxious parent worried about trivial illnesses. In July, 1990, Arnie’s heightened level of exhaustion, hitting him hard after an intestinal flu, heralded the onset of full-blown CFS.

By the time school began that September, Arnie was too weak to stand and was confined to bed. His mother took him to see a pediatrician numerous times, but the doctor was unable to explain Arnie’s profound fatigue.

Months passed, a period during which Arnie failed to receive either a diagnosis, or an education. By law, school systems are required to provide home tutoring to students who are too sick to come to school, but school systems also require that the child carry a diagnosis before they hire a private tutor using state dollars. Arnie had no diagnosis.

The school year ended, and another began.

Arnie was still house-bound because of the exhaustion. In every respect, he was absolutely typical of a child with CFS.

• He suffered from sore throats, headaches, sensitivity to light and blurred vision, pain in his muscles, joints, and lymph nodes.

• His ability to learn was diminished because of difficulties with memory and attention.

• He could not remember what he had read.

• His attempts to exert himself physically uniformly resulted in relapse, or worsening of his fatigue.

Eventually, doctors ruled out thyroid disease, lupus, multiple sclerosis, rheumatoid arthritis, HIV disease and hepatitis.

Some of these doctors did find immune abnormalities that suggested that Arnie was suffering from an on-going viral infection.

But the doctors believed that the abnormalities failed to fit a pattern associated with any particular disease – at least, any disease with which they happened to be familiar.

• Neurological tests revealed that Arnie suffered from vertigo and lacked the kind of fine motor control in his hands that might be expected of a boy his age.

• Other tests of intellectual capability demonstrated that Arnie’s short term memory and concentration skills were impaired.

All in all, everything about Arnie – his long history of illness, his physical exam, his laboratory tests – were typical of CFS, a disease his doctor did not believe existed.

It was just eight months after Arnie had become severely ill, however, that his parents began arguing about whether or not he was really sick.

Arnie’s father sided with the child’s pediatrician and other specialists, who had suggested that there was nothing medically wrong with the boy. Arnie’s father was particularly tired of paying for medical exams that failed to provide definitive answers. He believed his son needed psychiatric care.

Arnie’s mother felt differently. She did not believe the doctors. Instead, she began to explore unconventional treatments for her son, embracing, for a time, the “fringe” medicine offered by “ecologists,” naturopaths, and acupuncturists, each of whom seemed confident they understood Arnie’s problems, yet each of whom had a different explanation for them.

Arnie’s father thought these alternative healers were a bunch of loonies.

In time, the boy found himself at the hub of an escalating battle between his parents.

Large conflicts and petty complaints that had smoldered for years between the two adults erupted in a war centered on their son. Naturally, the boy tried hard to feel better in order to bring an end to the war. When his illness continued, in spite of his best efforts, he became withdrawn. And when Arnie’s father moved out of the house, Arnie assumed he had caused the break up.

A child sees the world from a simplistic, egocentric point of view. By the age of ten, children are better able to assess the relationship between cause and effect than they were at five, but the tendency to believe in a magical connection between one’s own actions and unrelated events has yet to vanish entirely at Arnie’s age.

Arnie’s parents made a mistake, too. They were unable to separate their private conflicts from their son’s illness, leaving him caught in the crossfire. What followed was probably inevitable: a kind of chain reaction in which a sick child became a battleground, fought over not only by his parents, but by the local school system, and, eventually, the state of New York.

As far as Arnie’s pediatrician and his teachers were concerned, the issues were clear.

Arnie seemed to be incapacitated with a slew of mysterious symptoms, just as his parents were in the process of divorce. These authorities believed Arnie was suffering a kind of psychiatric meltdown because of his parents’ acrimony.

According to the law of the land, if parents are causing a child’s illness – whether psychiatric or medical – then the parents are guilty of child abuse. In such cases, the law decrees that the appropriate social institutions intervene on behalf of the child, even removing the child from the destructive environment if necessary. In Arnie’s case, the vultures were beginning to swarm.

The principal of his school made several visits to the boy’s house during the first year he was absent, acutely aware that neither his parents nor his doctors had been able to offer the school a diagnosis. Each time she visited, Arnie was in the living room, seated, and watching television. He did not look sick to her.

The principal assigned a truant officer to the case.

The officer saw Arnie in his back yard one spring day, resting in a lawn chair, sipping lemonade. Finally, the school filed a truancy petition with the local court in order to force Arnie to return to classes. In addition, the local social services department launched an investigation of Arnie’s parents to determine if they were guilty of child abuse.

At the court hearing on the matter of truancy, the judge listened to the attorney representing the school argue that Arnie had been absent without good cause.

Arnie’s mother, representing herself, told the judge about her son’s medical condition. She called it chronic fatigue syndrome. She also described the holistic-style therapy of vitamins and herbs and acupuncture she had embarked upon to cure her son.

In turn, the impassive judge inquired about the impending divorce, as well as the custody hearing. Arnie’s parents had begun arguing about which one of them would raise their son after the divorce.

Not surprisingly, the judge, who knew of CFS only as the rather flaky sounding “yuppie flu,” concluded the hearing by ordering a psychiatric evaluation of Arnie. He also ordered Arnie to return to school.

The next day, two things happened, both of which ended in disaster: Arnie went to school, and his mother hired an expensive attorney.

At school, Arnie found to his dismay that his old friends greeted him with poorly concealed contempt. They had heard the rumors: Arnie was faking it. On the second day, the gym teacher decided that Arnie could benefit from exercise; the teacher believed exercise would shake the boy out of his long “slump.”

On the morning of the third day of this new regime, Arnie discovered he was once again too weak to get out of bed.

In the meantime, the lawyer hired by his mother had obtained Arnie’s medical records and had read them closely, paying special attention to the variety of opinions from specialists suggesting Arnie’s problem was psychosomatic.

The attorney made a unilateral decision: Assuming the doctors were correct that family turmoil had caused Arnie’s psychiatric problem, she decided to put her energy into helping Arnie’s parents obtain their divorce.

At the court-ordered psychiatric evaluation, the doctor began by interviewing Arnie and his mother together. Arnie was dizzy, exhausted, and found it difficult to concentrate on the psychiatrist’s questions. His mother recognized her son’s distress, and consequently did most of the talking in order to help conserve his limited energy. Afterward, the psychiatrist asked to talk to Arnie without his mother present.

The exhausted child was slumped in his chair. It was flagrantly apparent to Arnie that the psychiatrist had believed very little his mother said, and, after her departure from the room, he became even more withdrawn, even hostile. He responded to the doctor’s queries in monosyllables. Finally, the psychiatrist talked to Arnie’s mother privately.

The woman tried to “explain” chronic fatigue syndrome to the psychiatrist, who eyed her warily.

Struggling to suppress her own feelings of despair, she spoke as enthusiastically as possible about the alternative medical treatments she was continuing to explore. She wanted the doctor to know just how hard she was trying to help her son get well. The psychiatrist concluded the interview eventually, leaving Arnie’s mother feeling uneasy.

Afterward, the doctor called her husband, who took the opportunity to tell the psychiatrist that his boy was fine. His wife was the sick one, he added.

A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.

Arnie ‘looked well’, the doctor had argued in his report.

In addition, Arnie was clearly depressed. He pointed out, too, that neither the boy’s father nor the boy’s doctors believed Arnie was medically ill, and that the child was at the center of a custody battle between divorcing parents. More critically, the psychiatrist noted, there existed an unusual degree of “enmeshment” between mother and son; Arnie’s mother had acted as his spokesperson during their interview.

Further, she had appeared enthusiastic, even cheerful. Clearly, she had created an environment of oppressive neediness that had driven Arnie to feign illness, and her subsequent “over-involvement” with her child’s illness stemmed from this deviant desire to be needed.

The judge ordered that Arnie be removed from his mother’s custody and placed in a foster home.

He ruled that the final determination of Arnie’s fate would be decided in the custody hearing. He also demanded, for a second time, that Arnie return to school and receive twice-weekly psychiatric counseling. In a small concession to the boy’s claim of illness, the judge ruled that Arnie could be excused from gym class.

One week later, Arnie swallowed a handful of aspirin and several sleeping pills he discovered in his foster mother’s medicine chest. He was admitted to a psychiatric hospital immediately afterward. Though it had never been Arnie’s specific intent, his suicide attempt had confirmed beyond all doubt the diagnosis of the court’s psychiatrist, school officials, and the judge who had presided over his truancy hearing: He suffered from a serious psychiatric illness.

Arnie’s incarceration and resulting isolation would have been considerably less had he robbed the corner grocery store.

• The psychiatric hospital administrators forbade his mother to visit him; after all, she had fostered the imaginary illness in her son, then encouraged his belief in it.

• Hospital doctors ordered him to submit to counseling sessions, sessions during which he found it hard to avoid confessing his depression. Such confessions only served to strengthen the prevailing view that his bizarre “illness” was psychiatric in origin.

• Arnie was given large daily doses of tricyclic antidepressant medications, a class of drugs that often increase fatigue in CFS sufferers. When Arnie complained that the drugs made him feel worse, staff at the hospital simply ignored the complaints.

• They further demanded that he participate in all the ward activities. Arnie followed the path of least resistance, dragging himself from project to project without comment, but he felt as if he was dying a slow death.

In short, Arnie was snared in a trap worthy of Franz Kafka’s imagination.

He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.

Doctors like to solve problems. They like to make people well. Nothing makes them happier. Sadly, when they fail, their universal fallback position amounts to blaming the patient for his or her own disease. Even when the evidence points in the opposite direction, doctors frequently come up with psychological diagnoses in the absence of clear answers.

Children may be the most vulnerable of all to such treatment. It’s hard for them to fight for their rights, or make the case for their own sanity. Pediatricians, when flummoxed by their small patients’ complaints, tend to cast a suspicious eye at the child’s home environment: If the parents are in distress, pediatricians are provided with a convenient explanation for mysterious symptoms in the child.

As a pediatrician, I recognize the legitimacy of including the status of a child’s home life in my differential diagnosis – the decision tree I work from as I search for the correct diagnosis. But I do not automatically exclude the possibility of medical illness in a child because his parents are on the verge of a divorce, or if a grandmother died.

Just as it is possible to have child with diabetes living within a family in turmoil, it is possible to have a child with CFS living within a family in turmoil. Family dysfunction has its own signature; it creates its own particular pattern of difficulties in children, and these problems are very different from the problems of CFS.

Demanding that a diagnosis of CFS may be made only in perfect families makes no sense at all.

In truth, family problems are common, and with the additional stress of a chronic illness in a family member, families can even fall apart. In my view, psychological diagnoses need to be made with the same specificity and accuracy as medical diagnoses. It is not enough to pull a psychological diagnosis out of your hat if you are stumped. It is necessary to be a good doctor. Of course, the attribution of the psyche to the cause of physical illness is hardly a new phenomenon, especially in children.

Autism is a severe neurologic disease of childhood, but for many years doctors ascribed autism to family dysfunction.

We now understand that autism has nothing to do with poor parenting; it is an organic disease.

Like medicine, psychiatry has a spotty history. Perhaps the most classic example of psychiatric miscalculation was the belief, in earlier centuries, that “shock,” – the dire condition we recognize today as the result of a dramatic loss of blood – was due to a “shock” to the emotions. Early psychiatric literature stated that the thready pulse, pale face, clammy hands, and drop in blood pressure – classic shock symptoms – are the result of an emotional shock, likely a reaction to the shock of the sight of blood.

During the American civil war, however, a doctor noted that this emotional condition called “shock” was quickly followed by death among soldiers who were mortally wounded on the battlefield. He reasoned and later proved that shock was a physiologic abnormality caused by blood loss. Imagine telling someone who has just been shot in the chest to snap out of their blues and pull themselves together.

I am not going to debate the legitimacy of Munchausen’s syndrome by proxy. It exists, a sad commentary on modern society. But the diagnosis of Munchausen’s is made by obtaining absolute proof of a parent inflicting conscious and active harm on their child. Frequently, hospital administrators who suspect a parent of Munchausen’s will install a videotape in the room of the young patient in order to acquire irrefutable evidence of a parent committing such harm.

In Arnie’s case, neither the court nor school officials bothered to offer proof of his mother’s intent to cause harm, or even actual harm, no doubt because they had no proof.

Their actions were based on conjecture.

Even putting aside medical arguments, common sense tells us that Arnie’s the activity limitation is not due to suggestions from his mother. Adolescents are known for being rebellious and not doing what their parents tell them to do. Sometimes I have a hard time getting my son to clean his room. How could a parent tell a child to be tired all the time and stay sitting in a chair?

Fatigue caused by Munchausen’s syndrome by proxy is a legitimate diagnosis only if the parent is secretly feeding their children barbiturates or poison, and this can be easily tested.

In my view, the mother’s so-called “enmeshment” in her son’s illness was an attempt to protect her child from the authorities in the school system, the legal system, and the medical establishment, who understood absolutely nothing about the disease from which he suffered. I believe she should have been guilty of child abuse if she had been indifferent to her son’s suffering.

It would be wonderful if I could report here that Arnie’s story is a singular one. Unfortunately, these events are becoming increasingly common as more and more children and adolescents fall ill with CFS.

The medical establishment and our federal health agencies are digging in their heels, so to speak, hewing with vigor to the mistaken belief that CFS is psychiatric in origin. As a result, more and more children who suffer from CFS are being diagnosed with Munchausen’s syndrome by proxy, and the courts are remanding them to foster homes.

Arnie’s attempted suicide attempt, under such conditions, is hardly uncommon, either. Too often, children with CFS who have been taken from their homes, told they are imagining their illness, and sent to live in strange homes with adults who refuse to acknowledge their symptoms and disability, find death to be a better option.

Like Arnie, these sick children frequently end up in psychiatric institutions, deprived of the comfort of the parent, or parents, who may be the only people who understand they are ill.

Failure to diagnose an illness is, in some circumstances, malpractice. Failure to properly diagnose Arnie resulted in a forced separation from his mother – his only advocate – and his subsequent suicide attempt and incarceration. For Arnie, failure to diagnose had serious consequences.

The existence of CFS has been confirmed by the National Institutes of Health and the Centers for Disease Control. There continues to be legitimate debate as to what causes the illness, but to deny its existence because of a collective failure to understand its cause is inexcusable.

The American Academy of Pediatrics has stated that at least one part of its mission is to act as advocates for children. On the contentious matter of CFS, which afflicts thousands of children and adolescents, however, the Academy has remained silent. I believe the Academy’s silence is equivalent to child abuse. Our court systems have an obligation to protect the young and the helpless. Our courts, however, take their advice from the medical profession.

There are many forms of child abuse: neglect, physical abuse, sexual abuse… I would like to suggest that the term “medical abuse” be used when children are directly hurt by apathy or ignorance of health care providers.

Not the ignorance expected prior to scientific discovery, but ignorance defined as refusal of accepted fact. We are not talking about a new religion here, CFS has been recognized and studied in this country for nearly 20 years [now 30].

In the villages of ancient Europe, citizens believed that hitching four widows to a plow and forcing them to labor through the night would ward off epidemics of plague and influenza. Some day, the current apathy, perhaps more accurately, the silence, that veils the existence of CFS, will be considered medical barbarism on a grand scale, and just as ridiculous as hitching widows to a plow.

Arnie is 19 years old now, and remains disabled by CFS.

His incarceration in the psychiatric institution lasted six months, after which he lived in foster care for another several years. He has reunited with his mother, and is at last receiving basic symptomatic care for his illness.

– Dr. David S Bell, MD, Lyndonville, New York, August 15, 2000
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* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS – Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD, 2000.

“Anna’s Identity”: When Nobody Believes You’re Really Ill

This is the case history of a woman who suffered CFS symptoms since childhood but was never believed – until at age 35 doctors decided something ‘real’ was wrong. It is excerpted from Dr. Bell’s free e-book Faces of CFS – Case Histories of Chronic Fatigue Syndrome,* published in August, 2000. “Anna’s Identity” illustrates one aspect of cases he has followed since the mid-1980’s. 

Reprinted with the kind permission of ProHealth: 9/14/11

ANNA’S IDENTITY

Where does self end and illness begin? When we are ill for years, or for a lifetime, what part of our personality is really our own, and what part has been shaped or even created by disease?

These questions are probably nowhere more pressing than in the realm of brain disease, in which the foundation of the personality – the physical brain itself – is under siege.

CFS, of course, presents a particularly difficult challenge to its sufferers because, unlike many brain diseases, CFS leaves the brain intact enough to sense its own difficulties. As a result, people who have CFS are forced to cope not only with unceasing physical pain and exhaustion, but with sorting out their real selves from the demon that has attacked their faculties as well as their body.

Adults have an advantage over children with CFS.

Adults have accrued years of personal history; they have a sense of who they are, a personality, against which they may compare their new, unwell selves. Everyone around them may be snickering and laughing, but the adult with CFS knows he or she is unwell, and that what is happening is anything but normal. Children, on the other hand, lack the requisite life experience and sense of self against which to measure a sudden development like CFS.

I am a pediatrician by training, and I have learned to see the world through the eyes of my youngest patients; I also frequently look into their eyes and see the adult world reflected there. I do not believe I am being disproportionate to state that, for children, CFS is among the very most difficult, if not the most difficult, disease to survive into adulthood.

Perhaps the greatest tragedy of CFS in children is that poorly informed adults ascribe a false identity to the child, and that false perception of self is carried by the child into adulthood.

CFS has robbed far too many children of their identities, or more precisely, has robbed them of the chance to develop an identity – to grow into themselves. In the case of at least one patient I know, however, a true perception of self has emerged, despite the odds, but it took 35 years.

I am speaking of Anna, who became ill with CFS when she was probably four or five years old.

We often remember of our childhood that which was wonderful and beautiful, but when there has been little joy, memories are dimmer. Anna’s memories are cloudy, but she recalls that by the time she was six or seven, she was unable to keep up with her playmates.

• She could not skip rope because her balance was poor and the slightest exertion left her breathless.

• The bright sunlight that poured onto the playground left her feeling blinded.

• She found herself on the sidelines, inexplicably exhausted. Other children seemed to shy away from her.

Anna went to school every day, but she felt sick all the time.

She found it difficult to learn skills like reading and math. It was humiliating. She couldn’t remember her multiplication tables. Everyone else could, but Anna couldn’t. Anna began to devise tricks to help her remember, tricks so complicated she could not have explained them to anyone. For example: eight times seven. Add a zero to a seven, subtract seven, then subtract another seven.

For Anna, visualization was easier than memorizing. She could see numbers in her mind, for instance, and in order to solve the problem, she would look at them. She knew she did not think like other children. The world was a very confusing place.

She had trouble following directions. Her teachers were harsh with her; they believed she was either deliberately ignoring them, or preoccupied with private thoughts. But Anna was simply puzzled and tired.

The simple noise of the classroom distracted and perplexed her. It made her ears hurt, too. She had trouble finding words to describe how she felt. She once told her teacher that her brain seemed to “ache” because of the noise, and her teacher dismissed it with a wave of her arm.

“Pooh,” she said, “everything seems to bother you.”

Perhaps Anna’s greatest humiliation was the way her one of her legs would jump without warning, hitting the desk, or even kicking toward the child sitting next to her. Her classmates would burst into laughter, and her teacher would inevitably become angry, scolding her for being disruptive. Anna had no control over these muscle spasms, but her teacher never believed that.

Eventually, Anna learned that if she rested the legs of her desk on top of her feet during class, the weight of the furniture would diminish the force of her jerking legs. The desk was heavy, and hurt her feet, but the technique worked.

Anna wondered why her muscles behaved unlike anyone else’s muscles, and why she was unable to memorize facts, and unable to remember what the
teacher said to the class from day to day. She wondered why she lacked the energy to run or play games. She struggled to hide these aspects of herself, her deficiencies, from the girls in her class, because like any child she desperately wanted friends.

Yet, even though Anna privately wondered every day what was wrong with her, no one believed Anna was sick.

She recalls that during her early adolescence, she was stricken with a remarkable number of sore throats, fevers, stomach aches, swollen glands, and headaches. As time passed, and she went from child to teenager, her doctor began voicing his opinion that Anna’s “illnesses” were an obvious cry for attention.

Occasionally, she was hospitalized while a teenager, but the tests ordered by her doctor rarely showed any abnormalities. Her doctor, and eventually, her own parents, began to exhibit increasing frustration.

By the time she was 15, no one believed Anna was sick.

• Her parents’ frustration turned to anger. They were poor people, and the medical bills caused by Anna’s frequent trips to the doctor were beginning to overwhelm their resources.

• Eventually, the doctor her parents took her to simply patted her on her head and told her she had a headache every day because she felt badly about doing poorly in school. The doctor told Anna she needed to stop “playing those games.”

Anna’s response to the anger and disbelief was hardly surprising: she learned not to complain.

She recognized that articulation of her sensations of illness only increased her isolation and actually invited ridicule. She vowed she would hide her symptoms and her feelings however she could from her family, her friends, and her teachers. She even learned to hide these things from herself.

In time, there were two Annas: the one who was sick, and the one who cleaned her room, performed her chores, and attended school every day just like everyone else her age.

• The first Anna would look at the second with a kind of astonishment; the second Anna was ashamed of the first.

• Neither of the Annas found any comfort at school or at home, but they got by.

By the time she became an adult, Anna had hidden her secrets for so long that she barely acknowledged them herself. In fact, by then, she had persuaded herself that her doctors had been right all along: if she had some dreadful illness, she reasoned, her doctors would have identified it, or she would have died.

She embraced fully what she had been told throughout her adolescence: She had made up her symptoms, although her reasons for having done so continued to remain mysterious to herself.

Anna finished high school, married, and began working as an aid in a nursing home. She also had four children. Most of the time, she could keep her secrets hidden, from her husband and children, and even from herself. She was not even being dishonest, because she was in agreement that all the sensations she felt – the weakness, the fatigue, the mental cloudiness – signified nothing at all. There really wasn’t anything wrong.

By then, the years of denial had worked their effect; her identity, her sense of herself, had been formed by the opinions of others. The part of her that felt and experienced was shut away from the part that reasoned. She was, she would tell herself, perfectly healthy, but in fact her identity was built on a foundation of silt, and had little to do with Anna’s true experience, the reality she lived day-to-day.

By the time she was in her early 30’s, Anna skills of self-deception and general deception were finely honed. She had become a master of covering up embarrassing intellectual gaffes with warm, genuine smiles that would put those around her at ease. No one could be expected to see through her smile to the memory loss, or the peculiar lapses in her speech, lapses in which she would jumble the order of her words in a sentence, or make bizarre mistakes in her choice of words.

She had learned to work despite her daily exhaustion and painful headaches. In fact, she felt weak all the time.

But if she had to help lift a patient at the nursing home, she found the strength, proving to herself and the other aids that she was as strong as any of them.

• Though she often experienced double vision, she never said a word about it to her co-workers.

• When she stood rapidly, she got lightheaded, and her hands and feet went numb.

• She developed a painful stomach condition – probably an ulcer, she decided. A doctor she consulted prescribed a drug for ulcers, but the pills did nothing to end the pain and Anna quit taking them.

She was disappointed in neither her doctor nor the drugs. Whatever the cause of this particular ailment, she reasoned, it was outside the doctor’s reach because, as she knew already, there was really nothing wrong with her. She could get by, she reasoned, just as she had always gotten by.

Of course, she never discussed these problems with her fellow workers in the nursing home, and no one around her ever suspected them.

One harsh, upstate New York winter after another passed. Anna acknowledged to herself a certain loneliness, familiar to her from earliest childhood. She had never quite rid herself of that. But her routines were well-established, her coping mechanisms firmly in place, her secrets tucked so deep inside that she barely thought of them.

Anna’s identity was a fragile construct, however, and vulnerable. One bitter day in March of 1988, it began to break up.

She suffered a seizure while working at the nursing home, an event witnessed by several people. She was taken to a local hospital. When the doctor informed Anna afterward that she had experienced a seizure, she found it extremely difficult to believe, despite the bite on her lip and the deep gash in her tongue.

In fact, she did not believe it – not really. After all, after a lifetime of feeling sick, this was the first doctor who had ever told her with any conviction that she actually was sick.

And so she fell back on the opinion of her condition that had been voiced by doctor after doctor from her earliest memories: she was just suffering from a little stress.

When the doctor prescribed medications for seizures, Anna nodded, as if accepting the diagnosis and the treatment. But she did not take the medication. Why should she? She knew there was nothing wrong. There never had been anything wrong.

For three decades, Anna had been able to secret away the ill woman she had been nearly all her life.

But things were starting to change. She continued to avoid the prescribed anti-seizure medication, and both her doctor and her husband insisted that she was having convulsions. Anna found their claims hard to believe. She was unconscious when these so-called seizures were reported to occur; how did she know they were really occurring?

It had been a life-long struggle, but Anna had achieved the ability to believe the medical profession, her parents, and her teachers, that nothing was wrong with her. Now her doctors and family were insisting something was wrong. In fact, her doctor arranged for her driver’s license to be revoked. Anna couldn’t even get to work.

The seizures were exposing the sick side of Anna to herself. They could not be hidden away or covered up with a charming smile and a little joke. The turmoil in her mind was like a hurricane. If she accepted that the seizures were real, she risked opening the long-hidden conflicts about everything concerning her poor health.

In short, if the seizures were real, maybe everything else – the exhaustion, the mental fogginess, the numbness in her hands and feet, the pain, the forgetfulness, the endless headache – were real, too.

The bedrock foundations of her assumed identity began to erode. For the first time in years, Anna began to allow herself to acknowledge her physical sensations of fatigue and pain. She realized that she felt awful. But experiencing the pain and exhaustion somehow seemed better than pretending it wasn’t there. She answered one question that most people are unable to: Is it better to feel suffering than to feel nothing at all?

One day Anna saw a segment on television about CFS. Her mouth hung open as she heard about daily exhaustion, headaches, pain that no one would believe. It was Anna, not a doctor, who recognized at last that her symptoms were characteristic with CFS. In fact, with the exception of seizures, she was picture perfect for the symptom complex that defines the illness.

Anna read everything she could find on the subject. She felt as if she was waking up after lifetime spent cut off from her own feelings and perceptions.

She began to remember painful incidents from her childhood – how she had felt, and how she had learned to deny those sensations not only to those around her but to herself. They were disturbing memories, but Anna, by then 35, was at last beginning to experience her own reality and to recognize herself as she had always been. She was not the healthy, energetic woman she had pretended to be for so long; she was sick.

I met Anna during this period. We talked a lot about these matters in my clinic, and we talked over coffee sometimes in the Tiger’s Den Cafe down the street. We both recognized that her identity was in crisis, because she was having trouble distinguishing real illness from false illness.

After so many years of believing herself to be “falsely” ill, how could she turn around and be herself? In this, she had no experience.

The perception of pain and illness is very simple from a physiologic standpoint. Primitive animals feel pain in their nerve endings, and struggle to avoid it. Electric probes of one-celled creatures like amoebae show that even these tiniest of organisms feel pain. But advanced creatures, specifically human beings, have learned mechanisms for denying some of the basics of biology.

Nevertheless, our denial hardly changes the mechanical impulses of our nervous systems; our nerve endings continue to be stimulated, and send messages to our brain that are registered as pain or discomfort. Our denial merely creates an emotionally confused response to the pain, or health identity confusion.

Anna’s biggest problem, at 35, was her confusion over her health identity. Her confusion had logical origins, but her management of it – to deny her symptoms -put her at risk. She had lost what healthy people would call common sense. Her confusion had cost her the right to drive, and subsequently, her job. She could have controlled her seizures with medication, if only she had been able to believe they were real.

But because she had denied her illness for most of her life, she probably would have been hard pressed to believe she was injured if she had been run over by a truck.

As the years passed, Anna gradually began to learn how to feel. She said it was better to feel pain than to feel nothing at all. It was better to experience the reality of her life, in all its facets, than to deny all of its reality. After decades of pretending, she began to acknowledge to herself the truth of her own experiences, and the place of her identity within those experiences.

I marvel at Anna’s courage. She has been one of my teachers in life. And I wonder if I will ever find the same courage to explore the hidden parts of my own soul.

– David S Bell, MD, Aug 15, 2000
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* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS – Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD, 2000. This information has not been evaluated by the FDA. It is general information only and is not meant to prevent, diagnose treat or cure any condition, illness or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and reviewing it in collaboration with your professional healthcare team.