People often ask me about my daughter Rachel, and it’s difficult to know what to say. It’s a long story, and a sad one. Hard to convey what it means, because the meanings are manifold and elusive. So I shrug and say “Not well,” elaborating only when someone elicits a genuine interest in the answer. For those of you who do have such an interest, I offer this compilation of useful texts and personal testimony.
I am as close-minded as a Christian Scientist when it comes to acknowledging the reality of illness, but after eight years of close association with a chronically ill daughter, I have come to understand the parameters of her disease. Not in the sense that I feel her pain — I wouldn’t presume to make that claim – but I can read the signs, recognize the symptoms, sympathize with her distress.
The naming of a disease that is not understood is like throwing a dart at a wall. One can say in a general way that Rachel has an immune disorder. Doctors tend to diagnose their own specialty, so Rach has been labeled in passing with mononucleosis, celiac or Lyme disease, and a long string of others, culminating with one whose name remains elusive, and not explanatory, whether it’s called fibromyalgia or “chronic fatigue syndrome,” or the current frontrunner, myalgic encephalomyelitis, ME.
In his memoir, Love and Fatigue in America, Roger King lists three pages of names for the disease he shares with Rachel, and seems happiest with the simple “postviral syndrome.” He concludes:
“I have an illness with many names.
Many names mean no name.
An illness with no name may not exist.
Or may be many illnesses.
Or one illness with many forms.
It’s not clear.
A government committee is working on it.”
At the end of a long and arduous journey, King comes to a conclusion that offers the best summation I have read of the state of knowledge about the disease:
“The intermittent need to prove to doctors that my illness is not in my mind – when clearly my mind is affected – and to prove to insurance investigators that I am disabled – when every day is taken up by trying to seem not disabled – causes paroxysms of internal conflict.
“The mind-body distinction is, of course, insane. From time to time I check up on medical research for CFS and what I discover goes some way to showing just how insane this proposition is. The current preferred name for CFS is myalgic encephalopathy, a mouthful that translates to brain disease with muscle pain, which is fair enough as far as it goes. The essence of the illness seems to be viral damage in the brain, particularly affecting that part of the brain controlling the body’s autonomic functions. With all the body’s systems now eccentrically regulated, and the brain’s activities themselves directly impaired, the cascading symptoms become myriad and unpredictable in the way that customarily frustrates both sufferers and doctors. This science feels right: that mind and body functions are both comprehensively and jointly deranged by shared long-term damage.
“Which is only the beginning of understanding, since it does not explain why one person – well, actually one million people in America alone – falls ill and not another. The specific viruses most implicated shift according to the latest medical discoveries, but a general proposition is that the sufferers are those made most susceptible to damage by failures in their immune system. Since the immune system is where the body – the person – mingles with the outside world, this opens up explanation to everything in the world. The flulike illness that preceded my collapse – a typical sequence – is suspected of precipitating a profound immune failure that enabled this chronic viral illness, but many other factors are implicated in an immune system’s disposition to fail. Effort, stress, pollutants, pharmaceuticals, heartbreak – all of life, in fact – act to weaken immunity, producing the familiar colloquial condition of being ‘run down.’ To this complex of pathogens, environmental conditions and life experiences, there must also be added genetic predisposition. We are our experiences, but also everything that has been experienced before us.”
A nurse friend of mine was in Ireland on what happened to be “International ME Awareness Month” and clipped a story from the Roscommon Herald. An odd source for medical information, but it was obviously a reprinted press release, which offered an interesting cross-ocean perspective. The list of symptoms was very familiar:
“The main symptom of ME is persistent physical and mental exhaustion. This does not go away with sleep or rest and limits activity. Most sufferers describe this fatigue as overwhelming, and a different type of tiredness from any experienced before. Exercising can make the symptoms worse. This is called post-exertional malaise, or ‘payback.’
“People with severe ME are unable to do any activities themselves or can only carry out simple daily tasks, such as brushing their teeth. They are sometimes confined to their bed and often unable to leave their house.”
Other symptoms are listed, all of which Rach has experienced regularly or occasionally: “muscular pain, joint pain, and severe headaches; ‘brain fog’; painful lymph nodes; IBS-like symptoms such as bloating, constipation, diarrhea and nausea; sore throat; sleeping problems such as insomnia and finding little refreshment in sleep; sensitivity or intolerance to light, loud noise, alcohol and certain foods; less common symptoms [and we all know Rach is an uncommon girl] dizziness, balance problems, and difficulty controlling body temperature.”
In an odd way, it’s as if Rachel had superpowers, in her heightened senses and sensitivities. She can hear and smell things that few other humans can. She registers every slightest change in the environment, in a way that usually hurts her. I often compare her to Samantha Morton as the pre-cog in Minority Report, and only wish she was as comfortably afloat in a sensory-deprivation tank. At least she has her nice leather recliner, where she resides when I visit, to talk, read aloud, or watch our films and shows. On a good day, she may get out of the house for an hour or two, but mainly it’s a matter of carefully rationing her energy to make it through a day with some semblance of functioning.
Now Rachel has just turned 28 and it’s roughly eight years since she got sick. She has never been particularly healthy or robust; missed many, many days of school growing up (with mono and much else), which no doubt contributed to her vulnerability to the ME virus when it struck. She seems to have experienced one form of distress or another since the day she was born.
And yet what a delightful person she is! Insightful and witty, warm and gentle, lovely in spirit even when her body betrays her, she is a loss to the world she cannot fully enter into. But the world’s loss winds up my gain, as I get to spend time with her nearly every day. There’s no one with whom I can talk more freely, with a greater expectation of being understood. She’s a receptive, not to say captive, audience; a critical thinker, but not inclined to find fault with her Dad. We share a passion for books and films, and generally have similar opinions on same. I love everything about her — except the way she whips my ass at Words with Friends.
Here is Rachel’s own testimony (literally so, since it was written for a Congressional hearing a few years back):
I am twenty-five years old and I have had ME/CFIDS for more than a fifth of my life. What began as a flu-like illness unfolded into a devastating, debilitating disease, which has robbed me of much more than my health.
There must be fifty names for this poorly understood illness that I share with at least one million Americans, but it has been documented across the world. It is characterized by extreme exhaustion and pain in every part of our bodies. Collectively we ME sufferers have many symptoms, up to forty have been identified, and each of us goes through different combinations, but we share a basic pattern.
We are not malingerers, though we have been maligned as such. Without a clear, measurable abnormality to define this disorder, and with a medical system reluctant to admit its ignorance, we are often left to wander this bewildering maze of illness with few allies.
Abnormalities are most certainly present, but they are subtle, and in reliance on inadequate research and technology, an entire population is being marginalized. There are numerous parallels in the annals of medical history, of disorders such as AIDS or multiple sclerosis, where until an identifiable marker was found, patients were deemed neurotic.
Though some of the myriad of symptoms I experience daily are “commonplace”– who hasn’t been exhausted, nauseated, or had a headache? — the unrelenting intensity with which they occur is far from commonplace. Though an avid student, I can no longer read more than a few pages before the pain of holding the book, the throbbing of my head, or sheer exhaustion from the effort overtakes me. I cannot bend from my waist, or tip my head back without my visual world swirling. I am burdened by the plastic bags I carry everywhere, lest I find myself on the verge of vomiting with no toilet (or the energy to reach one) available. I am not, like some patients, dying from my disease, but ME/CFIDS has whittled my life to a bare bones existence — and I feel the blade every day.
I know that good research takes time and people, but foremost, it takes money. It is only with proper research funding that experts in diverse fields — immunology, neurology, sleep physiology, among others — will be able to begin projects that may help to answer some of the questions about ME/CFIDS. Research takes patience, but for patients like me, who struggle to perform even the basic activities of daily living, the wait is agony.
So, on behalf of myself, and all the others directly and indirectly afflicted by ME/CFIDS, I implore you to allocate resources RIGHT NOW to work towards a better understanding of this incapacitating disease. It is without a doubt a threat to public health and productivity.
What follows are snippets, especially relevant to Rachel’s condition (though ME is not necessarily considered an autoimmune disease), from the essay “What’s Wrong with Me?” by Meghan O’Rourke,The New Yorker 8/26/13:
One way to tell the story is to say that I was ill for a long time – at least half a dozen years – before any doctor I saw believed I had a disease.
One morning in March, I sat down at my desk to work, and found I could no longer write or read; my brain seemed enveloped in a thick gray fog.
Then I started to think about the curious symptoms I’d had on and off for years: hives, migraines, terrible fatigue, a buzzing in my throat, numbness in my feet, and [various viruses].
My blood pressure was alarmingly low. I got excruciating headaches whenever I ate, and one day when I got out of bed I fainted, gashing my arm on a bedside glass. My joints hurt, and I began to have a stinging pain in my back. There was an itching sensation, which would grow in severity, to the point that I felt I was being stabbed by hundreds of fine needles.
Until then, I had half believed – after years of doctors implying as much – that it was all in my head.
In a normal immune response, the body creates antibodies (Y-shaped protein molecules) and white blood cells to fight off viruses and bacteria. Autoimmune disease occurs when, for some reason, the body attacks its own healthy tissue, turning on the very thing it was supposed to protect.
Today, researchers believe they have discovered some eighty to a hundred autoimmune disorders, including lupus, multiple sclerosis, type 1 diabetes, rheumatoid arthritis. Even the term “autoimmune disease” may be imprecise: we don’t know in every case whether autoimmune dysfunction is the cause of the disease, rather than, say, a consequence. Then there’s the complexity of the immune system.
In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century. And yet some researchers say that the number of cases is rising at almost epidemic rates. . . It is a leading cause of illness in young women.
My experience of feeling unwell for years before I got a diagnosis turned out to be typical. It takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis. Patients end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coordinate and oversee a patient’s care, as at a cancer center.
One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible – if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. [As Daudet put it:] “Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.”
Because I had read that autoimmune conditions could be triggered by chemical exposure and by diet. . . I became hyperconscious of what I ate and what I exposed myself to.
A common symptom of autoimmune diseases is debilitating fatigue. Complaining of fatigue sounds like moral weakness; in New York City, tired is normal. But autoimmune fatigue is different from a sleep-deprived person’s exhaustion. The worst part of my fatigue, the one I couldn’t explain to anyone – I knew I’d seem crazy – was the loss of an intact sense of self.
To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular reactions. Not you.
Worrying about being crazy is part of many autoimmune sufferers’ lives. Even after diagnosis, you’re often trapped in an epistemological maze, not least because autoimmune diseases tend to overlap. Besides, if the experience of autoimmunity is not just in your head, it is also not just in your body. Focussing on symptoms, some studies suggest, can make them seem more severe.
And so the person suffering from chronic illness faces a difficult balancing act. You have to be an advocate for yourself in the face of medical ignorance, indifference, arrogance, and a lack of training. . . But you’ve also got to be willing to ask how much is in your head – and whether an obsessive attention to your symptoms is going to lead you to better health. The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears.
You can’t muscle your way through the enervation and malaise of autoimmunity – if you could, I would have. The real coming to terms with autoimmune disease is recognizing that you are sick, that the sickness will come and go, and that it is often not the kind of sick you can conquer.
In order to become well, I would have to temper my own fanatical pursuit of wellness. On the model of D.W. Winnicott’s good-enough mother, the trick was to be the good-enough patient, and no more.
I conclude with a diagram that explains a lot to me, and raises the hope that the arrows could be reversed, from the array of symptoms — nearly every one of which Rachel has experienced at one time or another, with some of them constant and enduring – to the organic source of this diverse complex of problems. (Click here to view diagram.)