The myth of normal, p.8
The Myth of Normal, page 8
Much like gene expression, telomeres manifest the vagaries of fate and history, class and race, stress and trauma. How? At birth, telomeres have many “units”—the DNA base pairs of which they are constituted—and by old age, far fewer. “We start out with about ten thousand when we’re a baby, and we get down to four thousand when we die,” Elissa Epel told me. Every time a cell in our body divides, telomeres shorten; when they get too short, their host cell dies or may deteriorate and become dysfunctional. As they shrink, immune function is impaired, inflammation rises, and we fall more prone to illness.
Telomeres have been called “cellular clocks,” in that they are a measure of biological rather than chronological age. Two people, even identical twins, could be the same age as computed in years, months, weeks, and days, yet one may be biologically older than the other, depending on how much stress, adversity, or trauma they have endured. That’s because stress shortens telomeres. (Doctors should take special heed: the telomeres of medical residents suffer greater attrition than those of other young adults in their age group.)[12] One of Dr. Epel’s studies found that caregiving mothers of chronically ill children had shorter telomeres than their counterparts of the same age. This biological age differential was proportionate to both the number of years of caregiving and the degree of stress as perceived by the moms.[13] Similar results were seen in caregivers of people with dementia: shortened telomeres and impaired immunity, reinforcing the idea that “chronic psychological stress has a negative impact on immune cell function and may accelerate their aging.”[14] In other words, stress ages our chromosomes, and therefore ages us.
Just as poverty and racism affect epigenetic functioning, so do these factors also shorten telomeres, and therefore lives. This sobering linkage was brought home vividly by a study of Black American men in 2014. “Our findings literally suggest that racism makes people old,” the lead author commented.[15] The same holds true for women. As part of the U.S.-based Study of Women’s Health Across the Nation (SWAN), the telomeres of Black and white middle-aged women were compared. The results were shocking: Black women were found, on average, to be over seven years more biologically aged than their white counterparts, consistent with higher rates of poverty, stress, hypertension, obesity, and related health conditions.[16]
As Dr. Epel told me, the effects of our socioeconomic environment are visible within our cells, if one knows what to look for. “The neighborhood deprivation, the crime, the income of the zip code,” she said, “all of that is associated with aging of the cells. That is to me one of the biggest demonstrations that our health is outside of our body.” Dr. Szyf spoke in similar tones: “For a century we’ve been obsessed with chemical changes, thinking anything that is chemical is true and anything that is not chemical is not true. What epigenetics taught us is that social changes are really not different than chemical changes.” The one is manifested in the other.
Fortunately, the door of environmental effects swings both ways: it turns out that experiences that build stress resilience can lengthen our telomeres, even in the face of illness or adversity. This has been shown by the work of Dr. Epel and colleagues with meditators, by Dr. Gene Brody’s work with deprived Black American teenagers, and in other research on men with prostate cancer.[17] This will be a recurring theme as we proceed: the seemingly bad news giving way to something empowering, if we approach it wisely. By learning about the impacts of adversity, we can also find pathways toward healing.
Chapter 5
Mutiny on the Body: The Mystery of the Rebellious Immune System
A lot of times I’ve had to pretend I felt good when I felt terrible.
—Venus Williams
“I kind of injured myself,” Mee Ok[*] told me recently, “because I was doing very well and then I tripped, running up a flight of stairs. So I stubbed my toe.” Her warm, impish humor radiates in the telling, as does a certain sense of pride. For most of us that would be an odd reaction to a painful mishap like that. But to the Mee Ok of seven years ago, such an injury, incurred while moving vigorously against gravity, would have seemed like an impossible dream. Diagnosed at age twenty-seven with scleroderma, she had become completely disabled in a short time despite all that mainstream medicine had to offer. She lives in the Boston area and was assessed and treated at one of Western medical science’s most hallowed venues.
From the Greek for “hard skin,” scleroderma is an autoimmune disorder that manifests in debilitating joint inflammation and painful tightening of the connective tissues. A more inclusive name for the condition is systemic sclerosis, as the buildup of hardened tissue can occur in many organs, including the esophagus, blood vessels, and lungs. In Mee Ok’s case, it showed up in agonizing swelling of her hands, shoulders, and knees. “The pain was everywhere,” she recalls. “It flooded my whole body.” She soon had to leave her job at Harvard as an assistant to a prominent academic. Formerly a 120-word-per-minute typist, she now found her hands becoming rigid and clawlike, stiffening into near paralysis. Merely touching the keyboard was agony. When I first interviewed her in 2014, her physiognomy was grim, her face a rigid mask, her taut lips barely able to cover her teeth. She was unrecognizable to herself—and wholly incongruous with the person one encounters now, her smile quick and responsive.
Within a few years of the onset of her disease, still in her early thirties, Mee Ok wanted only to end her life. Facing a death-sentence diagnosis, needing a wheelchair to mobilize, unable even to get out of bed without assistance, and anticipating that her torments would only intensify the longer she lived, she investigated the possibility of medically assisted suicide. “If I had been in a country where euthanasia was legalized, I would have fit all the criteria. The pain was unbelievable,” she told me. “There was no prognosis that really gave me a reason to stick around. I was losing my body so quickly, I knew that if I waited much longer, I was going to be trapped and I wouldn’t have even been able to push a button.”
Today, in defiance of all conventional medical logic, Mee Ok—completely off all medications—walks, travels, and hikes independently. She is currently writing her memoir, albeit at the speed of fifty words per minute: relative to the shape she was in not long ago, a true victory.
Scleroderma is among eighty or more related conditions dubbed autoimmune, each representing a virtual civil war inside the body. In effect, autoimmunity amounts to an assault by one’s immune system against the body it ought to defend. The particular form of the disease depends on which tissues or organs become the targets of this ruinous internal rebellion. If the nervous system is under fire, the result may show up as multiple sclerosis; if the gut, celiac disease or inflammatory bowel disease (IBD) such as Crohn’s or ulcerative colitis; if the joints and connective tissues, systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) or scleroderma; if the skin, psoriasis or autoimmune eczema; if the pancreas, type 1 diabetes; if the lungs, pulmonary fibrosis; if the brain, perhaps Alzheimer’s. In many of these conditions, several regions of the body are affected at once. Chronic fatigue syndrome—also known as myalgic encephalomyelitis (ME)—which affects millions worldwide, is among the best known of the recent additions to this roster.
Virtually all autoimmune diseases are characterized by inflammation of the afflicted tissues, organs, and body parts—which explains why frontline medical measures often begin with anti-inflammatory drugs. When nonsteroidal anti-inflammatories like ibuprofen or heavier artillery such as steroids themselves prove inadequate, physicians may prescribe medications to suppress the body’s immune activity.
Because the disease had first affected Mee Ok’s joints, the doctors believed it was rheumatoid arthritis. Their prescription was steroids: lab-made analogues of the natural stress hormone cortisol, a secretion of the adrenal gland in response to a threat. Ultimately it was the failure of both steroids and immunosuppressants that drove Mee Ok to suicidal despair. Her doctors had nothing left to prescribe. (I should add that Mee Ok’s illness was so extreme that her recovery is entirely unexpected, indeed unexplainable, according to standard medical thinking. I contacted her family physician in Boston, who verified the details.)
Although often disruptive and highly distressing, autoimmune symptoms can be nebulous and hard to pinpoint at first—not so much to the patient suffering them and seeking validation and support as to the physician in search of precise findings. Hence, it is not unusual for such diseases, which not infrequently overlap with each other, to fly under the diagnostic radar. Such was the experience of the tennis star Venus Williams, whose illness expressed itself in swollen hands, persistent fatigue, and misshapen joints: symptoms that would be alarming for anyone, even more so for an elite athlete. “I’d go to doctors, but never get any answers, so there was nothing I could do but keep going,” she told a newspaper reporter. “You almost get used to having all these symptoms,” she said. “You tell yourself to shake it off. Just keep going. Over time, you do start to wonder what’s happening and if you’re going crazy.”[1] She was eventually found to have Sjögren’s syndrome, a condition that primarily affects moisture-producing glands so that people suffer dry mouth and dry eyes, but which can also cause dysfunction in many organs such as the lungs, kidneys, pancreas, and blood vessels. Like many others, Williams was relieved to finally learn there was some objective reason, and even a name, for her physical tribulations.
In Mee Ok’s case it fell to the patient herself to make the diagnosis: a not-unusual role reversal in the internet age, particularly in cases where doctors have already thrown up their hands. “My body just continued to stiffen,” she recalled. “It was like it was undergoing mummification, like a self-mummification over time. It kept spreading and spreading throughout my body, and the pain was just unbelievable . . . They were giving me steroids and telling me that it was something that I would have to maintain, that the arthritis would never be cured—it wasn’t curable. I insisted on being tested for scleroderma, and that was when I found out my diagnosis: six months after the symptoms started.”
Autoimmune diseases are among the great unsolved mysteries of the medical profession. Most are considered “idiopathic” in nature, which simply means “of unknown origin.” Naturally, if we cannot identify the cause of a condition, we will be stymied in our efforts to cure or reverse it. In many cases symptom suppression or, sometimes, surgical repair or removal of damaged tissue is the most modern medicine can offer. Such measures do afford welcome relief to many, but they cannot reverse the course of disease and, as with Mee Ok, leave a great number of people consigned to prolonged deterioration and disability.
Troubling as this lack of clarity is for doctors and patients alike, these illnesses also present a number of other head-scratchers, scientifically speaking.
The first mystery is why they are becoming more frequent. Across many Western countries, rates of everything from celiac disease to IBD, from lupus to type 1 diabetes, and even allergies, are steadily rising, stymieing researchers.[2] “In the last half-century, the prevalence of autoimmune disease . . . has increased sharply in the developed world,” a 2016 New York Times article noted. “An estimated one in 13 Americans has one of these often debilitating, generally lifelong conditions.”[3] In the U.K., the diagnosis of Crohn’s disease increased more than threefold between 1994 and 2014,[4] while in Canada the rate of IBD in children grew by over 7 percent a year between 1999 and 2010, giving my country among the highest rates of this disease in the world.[5]
Such trends immediately rule out that go-to of medical explanations, genetic causes. Whatever effect genetics may exert—and no doubt they figure in some cases—logically they cannot account for the rise in prevalence of autoimmune disorders. “Genes do not change in such a short period of time,” Virginia Ladd, chief executive of the American Autoimmune Related Diseases Association, told Medical News Today in 2012. “The rapid increase in autoimmune diseases . . . clearly suggests that environmental factors are at play.”[6] In other words, something in our environment—or a combination of somethings—is inflaming our bodies.
For most of us, when we hear “environmental factors” in conjunction with disease, our minds tend to go to well-publicized, material factors such as air pollution, lead paint, and cell phone radiation. One interesting but unproven theory has it that the rise in junk food consumption is responsible for the globally increasing prevalence of autoimmunity.[7] Studies have not yet identified such a link.[8] Either way, a complete understanding of health and disease requires a far more encompassing view of the word “environment”: a biopsychosocial one.
The second mystery is the highly skewed gender distribution of autoimmune diseases. About 70 to 80 percent of sufferers are women, among whom such conditions are a leading cause of disability and death. Rheumatoid arthritis, for example, is three times more likely to strike women than men; lupus affects women by a disproportionate factor of nine. Mee Ok’s condition, systemic sclerosis, is three times more common among females.[9] Even more of a puzzle is why the gender imbalance is increasing in, for example, multiple sclerosis, a chronic, highly debilitating, potentially lifelong disease of the nervous system.
In 1930s Canada, the gender ratio was about equal; nowadays more than three women are diagnosed with MS for every man.[10] The trend is reflected internationally. “There is an increasing incidence of multiple sclerosis in women in Denmark. Danish women’s risk of developing MS has more than doubled in twenty-five years, while it has remained virtually unchanged for men,” noted a recent article in the Danish Medical Journal. Then, right in line with Dr. Ladd’s observations: “The explanation for these epidemiological changes should be sought in the environment, as genetics only explain a small part of the MS risk. The changes are too rapid to be explained by gene alterations.”[11]
None of the specialists who looked after Mee Ok inquired about the conditions—physical and emotional—that preceded her life-blighting illness. This, despite the voluminous research that links stress, trauma, and inflammation, and despite the multiple studies that over many decades have explored such connections in rheumatoid arthritis, in MS, and in other autoimmune conditions. Not only are such possible lines of inquiry not pursued, but they seem to be verboten in mainstream circles. “I’ve come to feel a little bit off the wall when talking about these issues,” a specialist in rheumatic diseases at one of the best-known U.S. teaching hospitals told me. “Since my graduation I have markedly changed the way I practice, because I started observing in my patients the relation between stress and the onset of their disease, and how great a role trauma, psychological and physical, plays in their disease.” This doctor, who requested anonymity for fear of alienating her colleagues (!), has observed firsthand what she calls “remarkable results” among her patients, both in terms of recovery and even, in some cases, getting off medications altogether. Yet she feels like a renegade in her own profession. “I’m surrounded by all my, you know, esteemed colleagues at the university who are investigators, and nobody is looking at these things.” Hearing this, I recalled the Harvard physician who told me that doctors follow these sorts of threads “at their own peril”—though he did think it was changing.
If even doctors who stray beyond medical orthodoxy can feel intimidated and misunderstood, what do patients experience? Another lamentable feature of Western medical practice—not universal, but all too often seen—is a power hierarchy that casts physicians as the exalted experts and patients as the passive recipients of care. For all doctors’ dedication and goodwill, the imbalance compromises patients’ agency over their own health and healing process. Essential questions about their lives go unasked, while patients in turn lack the confidence to insist that their intuitions and insights about themselves contribute to the process, much less guide it.
Had Mee Ok’s doctors inquired along these lines when she presented her distressing symptoms, they would have learned that she had sustained two major abandonments by the end of her first year. She was born in Korea to a single mom who placed her in an orphanage when Mee Ok was six months old. At one year of age, she was adopted and brought to the United States by an evangelical couple who reared her according to the strictest fundamentalist principles. Before Mee Ok was ten, her adoptive mother suffered a nervous breakdown. Sometime in her teenage years, her father, in a fit of religious remorse, confessed to her that he had sexually abused her for much of her early childhood, from age two onward. She had completely repressed these memories, secreted them and all associated feelings—pain, terror, rage—deep beneath the surface of her awareness. As we will see later when we discuss healing, Mee Ok’s improbable recovery, veritably a deathbed resurrection, owed everything to her confronting this long-buried trove of hurt.
Upon the emotional graveyard of what she could not afford to feel, Mee Ok erected an impressive edifice: a positive, can-do persona that not only kept her from experiencing her despair and impelled her to ignore her own needs, but also helped her achieve success beyond what she really believed was her due. In her job as assistant to the world-renowned professor, the grown-up Mee Ok found her work stressful and would habitually bear the tensions and pressures of everyone around her. “I was really not myself while I was there,” she said. “I was always having to operate as a more highly functioning person than I really was.” Such hyperfunctioning on top of hidden inner distress is a recurring theme among the many autoimmune patients I’ve encountered in my years of practice and teaching.
