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, and downloadable at www.davidsbell.com. “Anna’s Identity” illustrates one aspect of cases he has followed since the mid-1980’s. And the detective work continues. See the video of Dr. Bell’s recent 25-year follow-up on his patients.
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
* 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. It may be downloaded as a free eBook at Dr. Bell’s website www.davidsbell.com. 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.