Incurable? Chronic Illness: The New Global Pandemic
Karen Connington & Valentine McKay-Riddell © 2022
This article is a collaboration, a weaving of the personal experiences of two women who are professional healers—the mother of a son with Chronic Lyme disease and the wife of a Vietnam veteran with Complex PTSD. We chose to write the article because we wish to illustrate the impact of chronic illness on people’s lives—not only the lives of patients, but the lives of their significant others as well. We also want to alert the public to the knowledge that chronic illness has become its own pandemic—one that has grown, secretly and insidiously, over many generations, passed off by most of medical science as “incurable.” While our individual journeys have been unspeakably painful for our loved ones as well as for ourselves, we have learned an invaluable lesson:
True healing takes many forms and therefore, for those who believe in the power of the human mind and its connection with Source, is always possible.
V: Years passed before we were able to identify the problem. Our search probably began in the ‘70s, in a Gurdjieff-Ouspensky Fourth Way school in San Francisco. After the leader was discovered to be a sexual predator, we left the school and moved to Elk, just south of Mendocino. It soon became clear that lack of a spiritual practice was not the problem, and when a book about children of alcoholics jumped off the shelf, we thought perhaps Al-Anon or CoDA might be the silver bullet. For a while CoDA was helpful. But when we moved from Northern California to Santa Fe, New Mexico, we couldn’t find a suitable CoDA group—nothing like the one we’d left behind in Nevada City. Then we tried nondenominational spiritual groups—Unity, Unitarian Universalist, Celebrations—all good but still not that bullet. A return to the Course in Miracles provided a respite of several years. However, some group members in the class were judgmental of “negativity,” so that ended and my husband settled for studying the Course on his own.
Yet although we didn’t see it, a volcano was boiling beneath the surface. In 2012, after a psychotic break sent him to the local ER, my husband was diagnosed with chronic clinical depression, anxiety disorder, and “nonspecific chest pain”—in short, PTSD.
K: The initial surprise to this lovely but foreboding day was that my phone actually rang at all. I was at least four miles up the back of Snowmass Mountain hiking through dense forest where cell phones are generally quiet, out of range, carried only for emergency use. In reverence to the silence and to myself, I normally would shut it down and keep moving. But this call was from my son, Kevin, who called too rarely for me to pass up this chance to chat. I eyed a boulder, set my pack down and smiled at the opportunity—a delight that vanished swiftly with the tone of his voice.
His story wasn’t the least bit frightening on its surface. He travelled from his home in San Francisco to see a friend in L.A. over Labor Day weekend. On the flight back he was overcome with a deep malaise, rested for a few days, and called to share that his symptoms were growing worse by the hour. My brain registered a bad flu by virtue of the typical markers—chills, fever, fatigue and body pain–hardly alarming in an athletic 27-year-old man in premier shape. But my body, fueled by its own tenacious maternal instinct, was screaming to the contrary.
Ten years later, I flash on the resonance between my brain and my son’s on that beautiful September morning when we shared a panic grounded in the mutual, undeniable understanding that something was terribly wrong. I reassured him with as much motherly bluffing as I could summon in the moment, hung up and felt my rock beneath me. It was the only solid entity in my field. Everything else—the river and trees, moss and flowers around me–appeared as wild and peaceful as they had ten minutes before. At the same time, they radiated some kind of iridescence, indictive perhaps, of an alternate state of awareness among all humans when they realize in one moment that their lives are forever changed.
V: Definition of PTSD: Post-traumatic stress disorder (PTSD) is a mental health condition that some people can develop after experiencing shocking, scary, or dangerous traumatic events. Fear is a natural response to a traumatic situation and most people will recover from those feelings and reactions, but people with PTSD continue to feel fearful or stressed even after the danger has passed. ¹
Due to the nature of trauma, symptoms may not appear immediately after the traumatic event, but rather several months and even years afterwards. This is usually caused by denial, as most survivors of traumatic events often suppress the event altogether in an attempt to get back to normal. Once the denial starts to wear off, symptoms begin to manifest.
For many years after it was initially identified, PTSD was thought to primarily affect members of the military. During World War I it was called “battle fatigue.” In WWII “shell shock” was the popular term. The label was not extended to the general population until it became clear that the symptoms for returning veterans and victims of rape, assault, serious accidents, and other life-threatening events were identical.
Some symptoms of PTSD include: Flashbacks, in which the patient relives the event as if it were happening in the present; panic attacks; sleep deprivation; agoraphobia and the tendency to self-isolate; over-reacting to sudden loud noises or bright lights; claustrophobia; paranoia (many veterans have abandoned general society to hide out in the woods—constantly on guard and well-armed), these and more are some of the most outstanding symptoms of PTSD. Milder symptoms include free-floating anxiety (“waiting for the other shoe to drop”); unprovoked irritability; constant low-grade depression; and (more recently included) various physical conditions such as heart palpitations, tremors, stomach disorders, headaches, physical pain especially in the thoracic region, and impaired vision, to name a few. Under medical examination these symptoms are generally “unexplained”—that is, no true medical cause can be found.
K: Patterns: ME/CFS, Lyme Disease, & Long COVID:
The onset of Kevin’s illness is a story not always foretold before symptoms emerge, but repeated with increasing consistency by those eventually diagnosed with a set of chronic illnesses bearing significant physical and/or emotional similarities. Chronic Lyme disease, myalgia encephalomyelitis/chronic fatigue syndrome (ME/CFS) and today—within a slightly different blueprint—long COVID, can begin with warning signs ranging from fatigue and chills to rashes and night sweats, culminating months or sometimes years down the line as a dreadful malaise unlike any patients have ever previously known. Frequently they follow a traumatic incident or period in one’s life—not always instantaneously and sometimes never connected by patients consciously—but affirmed both anecdotally and in progressive studies of all three diseases. They are almost always misdiagnosed, or worse, dismissed as psychological imbalances. Many patients are referred to a consecutive tribe of specialists who only recognize certain subsets of their symptoms, practices that often lead to useless, painful meds and interventions, while armies of the actual pathogens running the show continue unheeded—breaking down cells, systems, and possibly even DNA. This is only Act One of a tragic play that begins suddenly and evolves into a bipolar path of hope and despair.
Ten years and nearly a dozen protocols after Kevin’s onset, we, like thousands of our fellow patients, have found that all treatments of these complex conditions are–as one of our more forthright doctors admitted–based on “inexact science.” Some people respond to herbs, others to antibiotics, repurposed pharmaceuticals, homeopathy, ayurveda, hyperbaric, and strange brews from high mountain forests. Many, if not most who are sick beyond a few years will, to the extent of their resources, try them all and more—while standing on their heads if there’s any indication that it will help.
The terribly sad news today is that all three conditions are soaring within the US and throughout the world. A recent article in Scientific American discusses growing research into long COVID, noting that, “understanding what causes this condition might illuminate treatments for ME/CFS, tick-borne illness and other diseases that involve dysfunction of the immune system, many of which are on the rise.” i The article’s author, Meghan O’Rourke, who herself has suffered chronic illness, proceeds to point out that though “medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people… the medical establishment has typically ignored the experiences of those people. Such conditions include …ME/CFS, …chronic Lyme disease, and more.”
The CDC recently called Lyme disease “the most common and fastest-growing vector-borne disease in the United States, with approximately 476,000 Americans diagnosed and treated each year with numbers growing.” ii A recent report from the Institute of Medicine noted that “an estimated 836,000 to 2.5 million Americans suffer from ME/CFS.” iii And then we come to what appears to be an unfortunate descendent of Lyme and CFS, like a child who is conceived by surprise, bearing certain attributes to both its siblings and its ancestors. Though the data for long COVID is still building as cases rise and fall across the globe, recent CDC data cite that “1 in 13 adults in the U.S., or 7.5%, have ‘long COVID’ symptoms, defined as symptoms lasting three or more months after first contracting the virus…that they didn’t have prior to their …infection.” If my math is correct that number (take a breath) equals 24,930,274 people. David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York City, who was actually speaking to an audience at the 2022 Aspen Ideas Health Program when that data was released in real time, called this number “staggering.” iv
V: Treatment of PTSD: The challenge with PTSD is that the usual course of treatment involves SSRIs (selective serotonin reuptake inhibitors) such as antidepressants, antipsychotics, and antianxiety medications which have proven helpful for some patients but dangerous and therefore contraindicated for others. 4
The “others” include people like my husband, whose reaction to most medications he was given was the exact opposite of what the medicine was intended to do. Antianxiety meds made him even more anxious. Antidepressants (SSRIs) created more depression and a host of unpleasant and unexplainable nervous symptoms, such as feeling “on fire,” or chilled, or like ants were crawling on his skin, etc.
When he reported these symptoms and begged to be taken off the meds, psychiatrists insisted that he was resisting treatment and stopped therapy. Eventually, we found a Jungian therapist who was most helpful for several years, but a resurgence of anxiety in 2018 rendered her form of therapy ineffective. The next therapist was a psychiatrist who also practiced EMDR, or Eye Movement Desensitization and Reprocessing. 5 However, he never got to the EMDR, because my husband kept reliving the early trauma of his childhood. In other words, he was dealing not just with PTSD but what is called Complex PTSD. Complex PTSD occurs when the patient has experienced trauma not just in one or two isolated incidents but repeatedly over months and years. 6
Complex PTSD is a condition that can occur after prolonged and repeated trauma, particularly due to child abuse or domestic violence. Trauma can cause problems with memory and disrupt the development of a person’s identity and their ability to control emotions and form relationships with others.
People with complex PTSD tend to experience the core symptoms of PTSD as well as disturbances in their thoughts, behaviors and emotions including:
- difficulties expressing emotions — it is common for someone to lose control of their emotions, such as in explosive anger or persistent sadness
- negative self-belief — a person can view themselves in a negative light, and they may feel helpless, guilty, or ashamed
- problems maintaining healthy relationships due to lack of trust — in some cases people avoid relationships completely, while others can develop unhealthy relationships
- ongoing feelings of emptiness
Complex PTSD can be caused by any type of long-term trauma, and usually involves situations where the victim has little control and is unable to escape.
The types of traumatic situations that can cause this disorder include:
- long-term childhood psychological, physical, sexual abuseor neglect
- long-term domestic violence
- being held in a concentration camp or prisoner of war camp
- involuntary prostitution, brothels or sex trafficking
- organized child exploitation
The main form of treatment for complex PTSD is long-term psychological therapy. This helps people slowly regain their trust in others. They can then gradually start to make friends, improve their work-life and opportunities, and develop leisure interests.
Support from family and friends is very important for most people. Minimizing other stressful life experiences can allow a person to focus on their recovery.
Treatment of PTSD and complex PTSD should occur under the care of a psychiatrist or clinical psychologist who gets to know the person over a period of time. 7
My husband grew up in a household governed by an abusive father and largely indifferent mother. As a result, he was predisposed to develop PTSD long before he joined the Navy in 1964. By the end of the Vietnam War, where he served as navigator of a C-130, he had been able to repress the memories of his childhood as well as memories of terrifying events that took place during his term of service. But slowly, over a period of years until we met as art students in 1977, those memories began to resurface. Like many of our creative colleagues we drank wine and argued philosophy for hours, but wine didn’t help, nor did our philosophical arguments. He is an artist, but painting didn’t help, and praise for his work only evoked avoidance. The various spiritual pursuits previously mentioned, though they alleviated his distress for brief periods, didn’t help either. Eventually, the intense self-examination he undertook during his spiritual studies triggered the psychotic break that sent him to the ER.
K: Profiles: ME/CFS, Lyme Disease, & Long Covid
As Kevin’s illness progressed from a diagnosis of ME/CFS in 2012 to a positive Lyme test in 2016, I, as most loved ones do for patients too sick to lift their heads in the morning, researched our options endlessly— late at night and into countless early mornings. The first startling fact that sunk swiftly into my awareness is that there is no one cure, no magic protocol (at any price), and no best list of doctors online for thousands of people seeking the restoration of their health, their prior selves, or even a new path to follow inside a lower-functioning body. While trying to sidestep the enormous void overtaking their daily lives as they suddenly find themselves without work, routine, or any solid assurance of hope, the best of their friends and families support them at various stages of the journey; the rest dismiss them in fear, confusion, or, at the root of all that, simple basic ignorance. Either way it is an incredibly cruel fate for people who are isolated, lonely, and too tired to engage, often without the energy to write an email or have a 5-minute conversation. But it was and still is, the dichotomy of this crisis, where so many people—multiple thousands engaged on web pages serving as virtual cafes—are at once all alone and all together, seeking answers that medicine, which calls itself “modern,” cannot provide.
The second very obvious condition of these three illnesses is youth. The tiny photographs online have gradually been revealed in the real faces of people we’ve met in Lyme clinics across two continents, among whom very few (generally only one or two in treatment rooms of a dozen or so) are under 45. The normal range is 20s to 40s, and the shock deepens when the families appear at these centers with kids as young as 3 thru 12 hooked up to IV antibiotics and tiny ozone masks. O’Rourke writes that while medicine maintains a static focus on acute conditions, “We’ve had ….fewer conversations about the societal responsibilities we have toward a growing generation of sick people, many of whom are between the ages of 30 and 50.”
The third disturbing, utterly consistent and compelling characteristic of these conditions is trauma—quite obviously a result of these patients’ swift loss of function, social interaction, or even drugs to kill their pain. And yet trauma remains even further outside the current conversation. Few if any Lyme physicians or clinics work collaboratively with psychiatrists and psychologists, in part perhaps because these conditions, impacting neurological systems as they progress, are beyond any protocols listed in the Clinical Handbook of Psychological Disorders. This gap in treatment generates more intense despair for those who are sick, while by its nature spins fear, depression, and anxiety, most certainly fortifying their illnesses and the pathogens that propel them. It is not a vicious cycle, but more like a ferocious orbit with its own destructive trajectory.
Kevin moved through the first 8 years of his illness with enough fight and function to ward off a fair degree of depression and angst. He studied online for his Masters in social work in order to help people with chronic illness, until his courses started draining the small allotments of fuel in his physical tank. He researched his disease and conversed with his cohorts online, studied Spanish, engaged in mind-body programs to reset pathways in his brain, and sat in endless hours of meditation. Within the past two years, the neurologic changes that we denied would ever affect him have not only robbed him of the energy to continue most of his personal pursuits, but inflicted a rampant anxiety and depression that no protocol, whether western or alternative, has been able to mitigate: not pharmaceuticals or counseling, energy work or massage, meditation or psychedelics.
V: Why am I writing about this now, 43 years after the beginning of this long, strange trip?
As a therapist who works with people of all ages, genders, and cultures, I have identified PTSD in every one of my clients. Young women and older ones are unable to forget details of being raped by a family member or stranger. Men still bear hatred for abusive fathers, for critical or absent mothers. Members of the LGBTQ community still suffer the fear of isolation and stigmatization that being “queer” evokes. People of color vicariously experience the insults that were rained upon their ancestors, parents, and other relatives in present time. Empaths, who make up a majority of my clients, experience not only their own trauma but often that of everyone around them. And this is just in my private practice.
What makes PTSD a global pandemic is that highly functioning people in respected professions and public office also exhibit its symptoms. The recent six years in particular have profoundly affected all members of our society—and by “our” I mean Western society, not just here in America but around the world. Charles Eisenstein in his recent article, Pandemonia, Part 1, 7 refers to the COVID pandemic’s effect on our culture and cites “medical totalitarianism” as a major cause. Those of us who refused to be vaccinated, he notes, were marginalized, isolated (not only by self but by others), and alone, resulting in chronic low-grade depression. People lost jobs, friendships, partners, children and other family members—not to the disease but to the fear of it. Even now this is part of the trauma my clients relive daily.
I remember defiantly joking about it in the beginning: “At the end of this, half the country will be alcoholics and the other half excellent chefs—or high-functioning excellent alcoholic chefs.” Those of us who for personal or medical reasons refused the vaccine laughed our way through the ordeal; made sourdough starter and baked lumpy loaves of bread; continued going to the grocery store, pharmacy, pet food store, and made friends and family out of the clerks and checkers to replace the friends and family we were forbidden to see; spent our evenings drinking wine and watching Netflix; and did it all over again the next day—for more than two years. I suspected but did not clearly recognize, how deeply wounded we’d become as a people, until my clients came limping out of the trenches to report how it had been for them. Many are mere shadows of their former selves. Some admit feeling suicidal. I cannot help wondering about the people on street corners with cardboard signs. What is hard for my clients must be hell for them.
But I cannot pin it all on medical totalitarianism and the COVID pandemic. Rather, I believe it is the intense pressure of Western life that has created the global pandemic I’m referring to: the pandemic of PTSD. Western culture is brutal. You make it on your own or not at all. Pull yourself up by your bootstraps—even if you are too poor to afford boots. It has been that way as long as I can remember. Austin, Texas in the 1940s, 50s and 60s was not the island of liberalism it is considered today. Part deep South and part Wild West, Texas was a warm-hearted patriarch towards those it knew and respected but cruel to outsiders, failures, and anyone different. “Who’s your Daddy?” was not just a question. It was the subtle intro to an inquisition, and you’d better have the right answers. I left Austin for Mexico City in 1962 because I didn’t think things could get worse. San Francisco in the late 60s and early 70s held the promise of paradise for rebels like me. But Donald Trump’s unthinkable 4-year presidency, and the heartless Trumpian political scene that still lingers, blatantly illustrate just how vicious our culture has become. Even here in Santa Fe, people used to be courteous, at a minimum. Young people were respectful of elders. Drivers didn’t honk and curse and try to run slower cars off the road as they do now. Over the years, New Mexicans have had our share of the “Wild West” with occasional shootings, robberies, etc. But now there are daily reports of someone who was raped, robbed, or killed—and a roster of people arrested for drunk driving or assault is published in the local newspaper. Casual arguments end in murder. Teenagers carry guns to parties and rage around town drag racing every night, inflicting anxiety and sleep deprivation on their neighbors, but the authorities won’t rein them in because, “they gotta be allowed to let off steam.” I have cautioned clients who like to confront intellectual opponents to pick their battles carefully, because with “open carry” still legal in New Mexico, anyone could be armed and triggered enough by a simple comment to shoot. Despite the hype, no one—tourists, locals, visiting family—is safe here these days. And these are all symptoms of the PTSD pandemic.
K: Trauma, in its insidious waves of confusion and dread, gradually crept into Kevin’s field and mine, challenging us both to tap into a kind of surrender we’ve never felt so utterly forced to invoke. Our spiritual practices certainly help, to the degree that we recognize an entire realm of consciousness taught and exemplified by spiritual masters and teachers for centuries. I’m a life-long Buddhist/Hindu/healing sounds practitioner, while Kevin quite naturally began meditating when he got sick, his initial goal to fill so many hours knocked him off his feet. Are we aided by these practices? Sometimes sporadically, sometimes deeply with new if fleeting hope, and sometimes not at all. For people without any spiritual or religious inclinations, I can only imagine that it must be even harder to access any semblance of hope, acceptance, or any state of mind that preserves basic sanity beyond the typical ways humans seek it—from exercise to alcohol.
It’s imperative that we as a global community wake up to the sparks in our midst, much like the small leaves and branches that smoldered last winter in the forests of California before igniting new and immense wildfires this spring. Why? Because as over millions of people in the U.S. alone suffer from these illnesses—dismissed, neglected and under-funded—the threat to each one of us is just as alarming as the climate change that may play a role in their emergence, or the guns that all Americans are now allowed to carry, or the loss of abortion rights that will dismantle a multitude of women’s lives. The list of global adversities is long, but if we miss just one spark–one tiny, hidden, smokeless spark–there will be few of us left untouched by the flames.
V: All this—the unremitting tension, intense competition, spoken and unspoken judgement, constant sense of insecurity—is what has created and continues to feed the PTSD pandemic. Contemporary medical research asserts that there is no cure for PTSD. Maybe so…and maybe not. I am not a physician, only a psychologist and counselor. But I deeply believe that to the extent we can reconnect with our Source, the nurturing Divine Feminine energy that creates and sustains all life on this planet, it is possible to cure anything. Our intimate connection with nature, with animals, plants, children, and simple unpretentious people—with the Earth herself—will heal us.
K: We now live in a world where millions of us live not only with some form of PTSD, but in a constant state of ongoing trauma induced by multiple, almost daily breakdowns—of culture, climate, health and safety, democracy and freedom. The past is the source of our deep-seated traumas while the present fuels them with a centrifugal force that quite literally makes our heads spin.
Our healing, individually and collectively, remains not incurable as we are told by too many talking heads, but certainly mysterious. Perhaps it is gradually emerging as a “Great Mystery,” resonant with the exaltation native cultures feel through their spiritual connections with earth and sky. Perhaps it is waiting for that inevitable moment when the old guard dies and the new one swiftly executes technologies to save and revitalize earth, sea and sky. Technologies that already exist, designed to make life habitable and sustaining for all generations to come. A merging of these and a continuing series of conscious, unified awakenings will ultimately restore this planet to Nature—and our Selves to ourselves.
7 SANE Australia (What is complex PTSD?), Blue Knot Foundation (Complex trauma treatment), National Center for PTSD (National Center for PTSD), NHS Choices (UK) (Post-traumatic stress disorder (PTSD) – Complex PTSD) (Retrieved 7.16.22 from https://www.healthdirect.gov.au/complex-ptsd#:~:text=What%20are%20the%20symptoms%20of%20complex%20PTSD%3F%20People,such%20as%20in%20explosive%20anger%20or%20persistent%20sadness
Note: If you or someone you know is in crisis, call the toll-free National Suicide Prevention Lifeline at 1-800-273-TALK (8255), available 24 hours a day, 7 days a week. The service is available to anyone. All calls are confidential. http://www.suicidepreventionlifeline.org