Desperation and the Quest for Control: The Dangers of Alternative Medicine
Contrary to popular opinion, alternative medicine is not always harmless, and when patients use it instead of conventional medical treatment, it can even be deadly.
I am a skeptic and a curmudgeon, so I was surprised when a friend of 30 years asked if she could add me to her “Reiki Grid.” A Reiki Grid, I soon discovered, is a pattern made with crystals, allowing a Reiki practitioner to send “healing energy” to individuals whose names or pictures are placed on the grid.
My friend is not a contemporary shaman. She is a hard-nosed, highly competent 37-year-old female attorney. She also has Stage IV breast cancer. Since her diagnosis, besides conventional cancer treatment, she has turned to alternative medicine and treatment modalities, including Reiki, which she credits for playing a large part in her health remaining stable at the moment. And what is Reiki? If I’m being diplomatic, I would describe it as “energy healing,” a sub-type of alternative medicine involving the practitioner placing their hands lightly on or just above the patient’s body in order to “transfer” energy. If I’m being truthful, I’d describe it as utter woo—a glaringly obvious pseudoscience.
And yet it is a pseudoscience many women of my demographic embrace. My lawyer friend was not the only chum from my childhood diagnosed with cancer this year. Another friend in her 30s, a former nurse, was diagnosed with early-stage neuroendocrine cancer of the cervix. Anxious to learn more about what they were going through, and dissatisfied with the dry statistics available online, I began reading cancer blogs (and other forms of social media), focusing on ones written by women around our age, in their 30s and 40s. This led to breast cancer blogs, which in turn led to metastatic breast cancer (MBC) blogs. What started as a layperson’s dabbling became an obsession. I probably read 30 MBC blogs, going through their entire archives. In my unscientific way, I began picking out patterns. One was that the majority of these youngish female bloggers tried using alternative medicine at some point, as their diseases progressed.
People dying of cancer are often desperate. Presumably, some are going to make unorthodox choices they might not have made when they were in good health. After all, what do they have to lose? Still, I was surprised by the high percentage of young women who bothered exploring alternative options that, to me at least, were a waste of time and money—things like Reiki, reflexology, coffee enemas (!), daily affirmations, homeopathy, alkaline-“purified” water, and so on. The list was endless. Many of these bloggers were well-educated professionals: office administrators, nurses, psychiatrists, professors, and teachers. A number of them were lawyers, like my friend. Shouldn’t these women, of all people, I thought, be less susceptible to the dubious allure of non-science-based medicine? And they weren’t just using it casually, hoping to reduce stress after a devastating diagnosis. Many actually believed that if they just hit on the right combination of alternative medicine options—say, intermittent-fasting, yoga, and acupuncture—that they could beat back, or even cure their cancer. It was magical thinking from a group of people I expected to be rational.
But they were not. I began researching further, and soon learned that metastatic breast cancer bloggers were not outliers when it came to embracing alternative medicine. They fit nicely into a larger demographic trend. Younger women who are middle-class or above are more likely than any other group to use alternative medicine. But why?
Female, younger, better-educated, and wealthier
Before going further, a note on terminology: in this article, I will mostly be using the term “alternative medicine” to refer to any medicine or treatments that have not been scientifically proven, and are generally considered outside the realm of conventional medicine. Other terms are used more or less synonymously, such as the most recently coined term, so-called “integrative medicine.” Holistic medicine (“whole-body”), and CAM (complementary and alternative medicine) are also often used. CAM is likely the most commonly used term in the alternative medicine community, although as Dr. Steven Novella, American neurologist and alternative medicine skeptic states, it is little more than a marketing brand. I will not be using this euphemism because my research indicates there is usually nothing “complementary” about adding alternative medicine to conventional medicine.
The alternative medicine industry is enormous and growing. In 2019, it generated an estimated global revenue of approximately 69 billion USD. According to the last broad survey conducted by the US National Center for Complementary and Integrative Health (NCCIH), from 2012, “natural products” are the most popular form of alternative medicine in America, a survey category comprised largely of supplements such as herbs, vitamins, and probiotics. 17.7 percent of survey respondents used natural products. Mind-body practices were next in popularity, including deep breathing (10.9 percent), yoga/tai chi/qi gong (10.1 percent), chiropractic or osteopathic manipulation (8.4 percent), meditation (8.0 percent), and so forth.
And who primarily is taking all this ginseng and doing all this meditation? Overwhelmingly it is women. A secondary analysis of the data collected in the 2012 NCCIH survey indicated that women were about three times more likely than men to use alternative medicine. Compared to people who do not use alternative medicine, users were more likely to be “female, reside in the Midwestern or Western USA, be non-Hispanic White, have a bachelor degree or higher, have higher personal earnings, be married or living with a partner, and have greater family spending on medical care.” This general profile was consistent across the literature. For example, a 2018 study researching links among alternative medicine-use, conventional cancer treatment refusal, and overall survival, noted that users were more likely to be female, of higher socioeconomic status, and better educated. In addition, they were more likely to be younger and to have private health insurance.
In other words, these were women with options: largely white, middle-class women. Unlike many women in developing countries who do not have access to science-based medicine, and are forced to rely on low-tech natural options (and suffer the health consequences), the women who use alternative medicine in the West do not need to, they choose to. Is this necessarily a bad thing? The answer is Sometimes.
Contrary to popular opinion, alternative medicine is not always harmless, and when patients use it instead of conventional medical treatment, it can even be deadly. In the 2018 study cited above, researchers found that cancer patients who used some form of alternative medicine alongside conventional medical treatment did not fare worse than those who chose conventional medicine alone. However, when people using alternative medicine chose it as their sole form of health treatment—while refusing recommended conventional cancer treatment like surgery, chemotherapy, and radiation—they died sooner. A 2012 University of Alberta retrospective study of breast cancer patients also showed significantly worse survival rates for alternative medicine users who declined standard treatment. Furthermore, the 2018 study also found that alternative medicine-users were much more likely to forego some form of standard cancer treatment compared to non-users. (Interestingly, a 2016 study showed that dietary supplement use, but not mind-body practices, was associated with skipping chemotherapy.) Taken as a whole, the research indicated that for patients with serious illnesses, just dabbling with alternative medicine could ultimately lead to dangerous health decisions like delaying or refusing conventional treatment. And as some doctors have warned, wasting precious time on alternative remedies can allow cancers to spread to the point of becoming untreatable.
Despite these dangers, the alternative medicine industry is thriving among women. Scholarly literature over the past few decades has begun exploring the reasons why well-educated, middle-class women are increasingly opting for it. One study described the alternative medicine subculture as being identifiable by “commitment to environmentalism, commitment to feminism, and interest in spirituality and personal growth psychology.” These words conjured up images of many of the women I went to graduate school with: politically liberal, intelligent, and faintly granola, with a love of Pilates and all things organic.
Similarly, a 2007 literature review on the beliefs of alternative medicine users showed that they often had the following characteristics: postmodern, rather than conventional belief systems; an appreciation of health approaches perceived as “non-toxic” and holistic; a belief in psychological factors as a cause of illness; and a view of themselves as both unconventional and spiritual. Finally—and most significantly, I believe—there was a great deal of evidence suggesting that alternative medicine users “want to participate in treatment decisions, are likely to have active coping styles and might believe that they can control their health.”
These last findings resonated. If one theme jumped out while I was reading the metastatic breast cancer blogs, it was that these women were on a quest for control, both over their illnesses and their lives.
The quest for control
Statistics and scholarly articles are useful, but they only tell part of the story. Reading the blogs and other social media posts written by metastatic breast cancer patients gave a human face to the numbers. One tale played out all too often, I noticed. The personal details varied, but the general outline was remarkably consistent: A-type woman gets cancer, is shocked; A-type woman battles back, using mostly conventional medicine; cancer progresses; A-type woman gets sicker, blames conventional medicine for being ineffective and disempowering, and begins/continues/ramps up alternative medicine-use to take control of the situation; cancer progresses; A-type woman dies.
Mixed among those timeline elements there were sometimes remission or non-progression periods of months or even years. Too frequently, the MBC bloggers and social media users attributed these periods of stable health to the magical healing properties of Vitamin C drips/mindfulness/magnet therapy/cannabis/insert quackery here. Sometimes they mistook these periods for being cured, and distressingly, began preaching the gospel of whatever particular alternative option they credited for curing them.
One such example was Stefanie LaRue of Venice Beach, California, a beautiful and charismatic advocate for Rick Simpson Oil (RSO), a cannabis oil with a comparatively high concentration of THC. LaRue was diagnosed with Stage IV breast cancer in 2005, aged only 30. Remarkably, LaRue battled this highly lethal cancer for eight years, undergoing six rounds of chemotherapy and a mastectomy, in addition to other conventional treatment, before her third recurrence in 2013. At this point she decided to forego further chemotherapy, opting for RSO instead, which she researched on her own. In an interview with Medical Jane (a perhaps less than unbiased source), LaRue claimed, “Cannabis oil killed all of the tumors in my body. My monthly lab and quarterly scan results are proof that the cannabis oil treatment worked.” LaRue’s last clear scan was in December 2014. Based on her social media posts, there is limited evidence that she availed herself of at least some of the conventional cancer treatment options available, along with the RSO. LaRue’s cancer “cure” lasted two and a half years. She died on May 31st, 2017.
In all likelihood, as oncologist Dr. David Gorski states repeatedly in his invaluable anti-quackery blog, Respectful Insolence, it is conventional treatment—not cannabis or what have you—that can help slow down disease progression for patients like LaRue and others. Gorski explains that surgery (mastectomy or lumpectomy) alone is often fairly effective for locoregional control of breast cancer in its early stages, reducing the local recurrence rate to 30–40 percent. Radiation on top of the surgery brings the possibility of recurrence down to 10 percent. Chemotherapy and hormonal therapy help achieve greater systemic control and thus further improve patient survival, but this effect is most impressive with advanced cancers. RSO was almost certainly not what was keeping LaRue alive. Surgery and chemo was. Furthermore, there is no credible scientific research showing that any of the alternative medicine products or modalities can cure cancer. Repeat: Reiki and weed cannot cure cancer.
Another woman whose story struck me as particularly poignant was Rachel Petz Dowd, wife and mother of three, and a former Miss New Hampshire. Dowd died in 2016, age 47, after a two-year battle with breast cancer. During that time, she wrote a blog entitled, Rachel’s Healing: My Journey to Heal Breast Cancer. As the title suggests, Dowd appeared to believe she would fully recover—right up to her final posts written from a pricy Mexican alternative treatment cancer hospital. Dowd’s blog is replete with references to the supposed healing powers of alternative medicine, which she favored for many of the reasons outlined in the scholarly literature cited above. After reading so much unscientific drivel from alternative medicine practitioners, I recognized the language right away. Dowd habitually wrote about “detoxifying” her body and strengthening her immune system, something she believed could be achieved through practices like “clean” eating, juicing, and even taking coffee enemas.
Near the beginning of the blog, Dowd laid out her extensive and punishingly restrictive anti-cancer health routine. Her daily diet included the following: essiac and chaga teas; various supplements, including fish oil and iodine; lemon water with fulvic acid mineral complex; Budwig Diet elements (an unproven anticancer diet consisting largely of flaxseed mixed with cottage cheese); Laetrile; free-range meat; salad; and Chinese herbs. She restricted herself from eating “sugar, fruit, artificial sugars… alcohol of any kind… things that can turn into sugar such as grains, breads, beans, corn, rice… root veggies that contain sugar either [sic] such as beets, carrots, and no vinegar or yeast of any kind. No dairy except for high quality eggs [?] and organic low-fat cottage cheese, etc…” For treatment, Dowd favored things like magnet therapy, meditation, vitamin IV infusions, infrared sauna sessions, acupuncture, hyperbaric oxygen chamber sessions, and much, much more, apparently making multiple trips weekly to a nearby naturopath clinic.
It was obvious to me how Dowd had become a Miss New Hampshire winner: besides her beauty and energy, this was a woman possessed of rigid self-discipline. If the blog was any guide, she regarded healing from cancer as her full-time job, and scheduled every minute of her day accordingly. Her mania for self-control extended beyond therapy and diet. Dowd even went so far as to feel guilty about not being able to control her thoughts, confessing, “I need to work more on finding ways to get my mind thinking about fun, joy, and laughter more often, so I am pleased we are heading into summer with the kids.”
As Gorski observes with sensitivity in his anti-quackery blog, a breast cancer diagnosis, and the challenges of navigating an often impersonal medical system, can cause once-confident women to feel like they have lost control over their lives. Alternative medicine practitioners appear to offer their patients a “human touch.” Gorski states that when a woman decides on alternative options, “she often sees herself as ‘taking control’ of her treatment from uncaring doctors whose treatments, she is told, do not treat the root cause of her disease. Understandably, she may feel liberated and back in control.”
This was precisely my impression after reading about LaRue and Dowd’s cancer experiences, and their decision to rely more heavily on alternative medicine. In a letter to her oncologist, Dowd claimed she took an “integrative” approach to medicine (this is a common refrain among alternative medicine users), but her distrust of chemotherapy and radiation is evident throughout the blog. At one point, she decided against the oncologist’s recommended radiation treatment, despite being made aware of the higher rate of recurrence without it, instead opting to use her “arsenal of nurturing therapies and supplements.” Later on, Dowd blamed chemotherapy for “tearing down my immune system,” instead of crediting it for keeping her cancer at bay as long as it did. Her general attitude, expressed early on in the blog, is this: “When I look at nourishing solutions I feel empowered. When I consider chemo and radiation I feel helpless.”
When empowerment becomes toxic
There is nothing obviously empowering about being diagnosed with Stage IV breast cancer, though there is a determined media campaign to make it so. Unlike earlier-stage breast cancer, it’s a terminal disease. At this stage, the cancer has spread—metastasized—through the bloodstream to a secondary location/s in the body, most commonly the bones, liver, lungs, or brain. Median survival after diagnosis is a scant three years.
That doesn’t mean a patient should lose all hope and assume death is imminent. Eleven percent of women under the age of 64 diagnosed with metastatic breast cancer will live 10 years or more, and there are rare instances of patients living as long as 18 years plus, and enjoying relatively long periods of stable health. But I found it bizarre—and willfully perverse—that it had become common for patients suffering from this debilitating and deadly disease to refer to themselves as “thrivers.” Some were compelled to explain how their diagnosis was an “opportunity for growth.” Some poured their battered bodies into lingerie and fishnets, and walked the catwalk. Others maintained glamorous Instagram accounts whilst dying in a hospital bed. And the pink that has become a highly recognizable marketing brand for breast cancer research—my God, all that cheery, lobotomized pink drove me mad.
These assertions of selfhood struck me as desperate and sad. It was also notable that these behaviors were common among women with cancer, not men. Men with prostate cancer do not, apparently, feel the pressing need to show the world that they are “still empowered, strong and sexy!” in the words of one designer who used breast cancer patients as runway models for her New York Fashion Week show.
Tim Rogers
I remembered my own mother’s brief, violent struggle with renal cancer. By no stretch of the imagination would I call what I saw then “thriving,” or being “empowered.” Yet none of the suffering she went through ever for a split-second took away her humanity. Why isn’t it okay, I wondered, for so many younger women dying of cancer to admit that this is a near unequivocally bad thing, that they felt fear and pain, and that they had little to no control over their disease? In a rare and revealing passage on her blog, Dowd finally admitted, in passing, to vulnerability: “I’ve always been great at appearing like everything is fabulous on the outside, and it was one of my strengths in the business world… never let anyone rattle me or see me sweat, but there are emotional scars from the ordeal of going through this process.” Evidently, there is a price to be paid for years of repressing negative emotions in order to always appear strong.
The story of Kate Callaghan, a New Zealand-based nutritionist, also illustrates the limits of “empowerment” as a helpful concept when it comes to terminal illness. Callaghan was yet another attractive, powerful, intelligent A-type woman (what I was beginning to recognize as a recurring breast cancer type) who had the misfortune of being diagnosed with Stage IV breast cancer. She died in June of this year, at 36 years old, just seven months after her diagnosis.
Callaghan seemed to be the last person one would expect to get cancer. She branded herself “the Holistic Nutritionist,” and was also a personal trainer and lifestyle coach, “specialising in hormone healing.” She cohosted a podcast and had written a book on the topic, becoming interested in it after successfully overcoming her own hormone-based amenorrhea and infertility. Her online presence, including her Instagram account, is liberally sprinkled with the jargon of the 21st century alternative medicine industry, using words like “wellness,” “empowerment,” “holistic,” and “detoxification.” After going through her social media, and listening to some of her podcasts, I was struck by the fact that here was yet another instance of a younger woman with terminal breast cancer who seemingly believed she could cure herself through a masochistic “health and wellness” routine.
In one podcast, Callaghan described said routine, mentioning, among many other things, doing hot yoga; taking numerous supplements and vitamins (including Echinacea, curcumin, broccoli sprout power, B17, Vitamin D, Omega 3s, etc.); injecting her breast with mistletoe extract; “juicing;” and doing intermittent fasting (she only allowed herself to eat food eight out of every 24 hours). She sheepishly admitted to drinking coffee once a day, careful to point out that the coffee was organic and malt-free, and that she took it with but a single drop of Stevia, some coconut oil, and 5 or 6 cardamom pods (“cardamom has been shown to kill cancer cells,” she claimed).
I found her Instagram account to be similarly rigorous and similarly distressing. With a terminal diagnosis, I would’ve headed straight into the loving arms of Brother Bourbon and Sister Chocolate, but Callaghan displayed heroic self-control. Besides maintaining a virtuous diet, she did things like take a home sauna “every second day for 45 mins at 50 degrees C.” She admitted to discomfort: “Yes, it’s f-ing hot, but it needs to be for my current health condition.” The wellness laundry list in another of her Instagram posts is exhausting just to read. Instead of “fighting cancer,” a metaphor she disliked, Callaghan wrote, “I focus on how can I nourish myself more? How can I flood my body with the nutrients it needs to function optimally, while avoiding things that throw it off kilter? How can I calm my mind and decrease my stress levels, which will strengthen my immune system? How and where can I find more joy and laughter in my life? How can I reduce my exposure to chemicals? How can I show myself more kindness each day, and every second and minute of each day?” [Italics added for emphasis.]
Like Dowd, Callaghan attempted, with military precision, to schedule “joy” into her life, adding it to the many tasks she felt she must complete that day. Reading this, I felt depressed that a woman so intelligent and strong placed such a heavy burden of perfection on herself, even whilst dying. In her final months, most of her Instagram posts are upbeat. One stands out, featuring a close-up photo of Callaghan’s face, red and swollen with tears. In the caption she wrote about feeling overwhelmed: “Some days I feel like I’m nailing this whole cancer thing. And then other days I just want to wake up and realise it was all a bad dream.” She then immediately apologized to her readership for the “downer of a post.”
In a podcast interview recorded just a few months before she died, Callaghan advised other cancer patients to remain hopeful and not to “buy into” a negative prognosis. Throughout the interview (with a few tell-tale faltering moments) she insisted she was going to recover from her terminal cancer, and said she refused to accept her prognosis as reality, lest it become her reality. She also made the unwarranted assertion that “there are people curing themselves all the time of Stage IV cancer.”
When the host asked her what belief people should embrace in order to live a fulfilled life, Callaghan paused a moment before replying, “That they get to choose their path.” She added, “In any given circumstance.” In the context of the interview, it was clear she was not just saying, Stoic-like, that she had the power to choose how to face her own death. No, she was implying that she could overcome premature death through some combination of magical thinking, willpower, and alternative medicine. It was absurd, of course. Callaghan had no choice. As I listened to her voice, I could sense a steely will cocooned inside a fragile body. I knew by then that Kate Callaghan was married and had two small children. I wept.
Stefanie LaRue, Rachel Petz Dowd, Kate Callaghan were women of courage and determination. Writing this essay, I was always aware that they were not just evidence of a thesis, but someone’s mother, sister, daughter, and friend. Who among us can say with certainty that we would handle such a dire diagnosis as terminal cancer with as much grace as they did? I cannot. Our time will also come, but there are lessons we can learn from their stories while we are yet living.
The obvious one is not to place undue trust in alternative medicine: Practising yoga may well reduce stress, but it cannot cure Stage IV cancer. The spiritual lesson is more profound. There comes a point, and middle-class Western women have reached it, when the feminist creed of empowerment becomes toxic. We can complete a medical degree, raise a family, run a marathon, but we cannot outrun death. The same masterly control, the same genius for organization that A-type women apply successfully to excel in their careers, is applied in vain to tame terminal illness. When we accept that there are limits to our control, we free ourselves from a crushing psychological burden—a burden heavier than terminal cancer, a burden heavier, perhaps, than even death.
