Healthcare Is Not a Privilege
Wellness gurus will not save you.
For an in-depth discussion on this topic, check out Hot Take Think Tank episode four.
When I was at my sickest with what would eventually turn out to be a neurological condition, I developed a deep distrust and resentment toward the healthcare system. I’d had numerous unhelpful or dismissive interactions with healthcare professionals. When I finally did get a diagnosis, it was crushing to be told that the treatment options were few and the prognosis was poor. I felt failed by the medical system, and so I went searching elsewhere for answers.
Before long, I wound up in the vortex of the online chronic illness world. I decided to forgo all pharmaceutical treatments and use turmeric pills and marijuana to manage my symptoms. In addition, I tried: cutting out sugar, gluten, alcohol and caffeine, acupuncture, chiropractic, osteopathy, naturopathy, somatic therapy, craniosacral therapy, neuroplastic rewiring, self-directed exposure therapy, visualizations, positive thinking, yoga, pilates, walking, jogging, dancing, swimming, self-induced neuromuscular tremors, intramuscular stimulation, trigger point injections, electrode stimulation, eating ancient grains, dark greens, berries and fish, drinking iron, protein, herbal teas, gatorade, cinnamon water, kombucha and more water, meditation, body talk, breath work, energy work, arnica salve, peppermint oil, devil’s club cream, several tinctures and bach flower remedies, a variety of supplements, homeopathic pills, probiotics, fibre, spinal traction, neck traction, foam rollers, resistance bands, weighted blankets, weighted eye masks, eye drops, and tinted glasses. Some of these helped, some didn’t, and some made things worse. I spent nearly every dollar that was left over after rent and bills on these treatments, for years.
This may sound insane if you’ve never been chronically ill, but my experimentation is not that unusual. When you’re in constant and unrelenting pain, you’ll try just about anything to feel better, and the online wellness world is perfectly positioned to profit from your desperation.
Looking back, there is a glaring irony in how the wellness world positions itself: in one breath, they will insist that western medicine profits from keeping you sick, and in the next, they promote their supplements. Do they not also profit from continued illness? Their critique of western medicine sounds a whole lot more strategic than altruistic to me now. I am not saying that all wellness influencers are disingenuous; many seem to be true believers in what they are hawking. But either way, they want you to spend your healthcare dollars on their products instead of (or in addition to) established, evidence-based treatments. They benefit from mistrust in traditional healthcare. I know what it feels like to be in the thrall of a healer who claims to hold the secret to my health, and this has made me protective of others going down that road.
Many conditions simply have not yet been researched with the rigour and budget required to develop successful treatments, and those suffering feel we have no choice but to wander the realm of the experimental (or the alternative) to find relief, and charismatic marketers with pseudo-scientific product names descend upon us eagerly. It is crucial that we continue to push for well-funded research, and stay vigilant to claims that are too simply good to be true (while minimizing the crushing of people’s spirits when possible). One of my specialists would tell his patients: “if there is a breakthrough in the treatment of your condition, it will make headlines in mainstream news. It will not be reported on an obscure internet blog.”
Now, whenever I talk about this on social media, a small number of people offer a response that boils down to “an evidence-free treatment is better than nothing”. If proper medical treatment is unaffordable or unavailable, at least [insert snake oil of choice] can provide someone the illusion of improving their health. Every time someone sends me a message like this, two things happen. First, I have to pause and pick my jaw up off the floor. And second, I check their profile; and they are, so far invariably, an American. I have never had a Canadian say this, or suggest that it is me, actually, that is doing harm by raising awareness about quackery—that I am bursting the bubble of magic that allows these remedies to “work”. And this divide intrigues me.
To give these critics the benefit of the doubt: they seem to be strong believers in the placebo effect, and therefore think that evidence-less treatments can still help people feel better. And I’ll be the first to say that certain aspects of health remain mysterious. I’ve experienced spontaneous remission; I’ve felt relief that science couldn’t account for. Whether it’s due to the placebo effect or the simple reality that some chronic symptoms resolve over time without medical intervention, people get better in all sorts of ways. I am not advocating for shutting down access to alternative treatments (notable exceptions being the dangerous and the fraudulent), or for judging people who pursue them. But rather than defending sugar pills, I’d rather defend the proper funding of medical research that can produce treatments that actually work.
Since I’m a Canadian citizen living in Canada where we have a publicly funded healthcare system, I did not pay out of pocket for any of the appointments I had with my family doctor or the litany of specialists that I saw. Certain allied health appointments (physiotherapy, massage and occupational therapy) were subsidized by the government as well. So although there was much room for improvement in the care I received, I received care, which makes my experience markedly different from my American equivalent: a low-income young person too sick to work. When American writer Mattilda Bernstein-Sycamore was in town for a book tour stop, I remember complaining to her about my health woes. She asked me if I’d been able to see a doctor. That moment stuck with me, because of course I had. I’d seen many. But her question made me realize how that could not be taken for granted where she was from.
I’ve seen many Americans who are trying to understand the awful disparities produced by a fragmented and profit-driven system refer to healthcare as a privilege. I don’t think I’ve ever heard a Canadian use this framing. I’ve written a lot about my experience in the social justice subculture and although there are plenty of strange ways people use the concept of “privilege”, this one feels particularly damaging. “Privilege” in this context refers to unearned benefits that some people receive, which gives them an advantage over others. Privilege is understood as something permanent and intractable: not something that can be removed or rejected, only acknowledged and examined (the idea that a white person could opt out of white privilege, for example, is considered absurd and impossible). Intersectional feminists may speak of abolishing privilege in the abstract, but not in practical terms. One outgrowth of this understanding of privilege are the rituals of penitence we see on social media, where a rich white lady will announce that she’s a rich white lady, before filming herself being a rich white lady. Although I used to value and engage in such empty gestures, I now find them deeply embarrassing, and I wonder what exactly distinguishes them from, well, bragging.
Conceiving of healthcare as a privilege obscures the fact that it is a human right. Privilege discourse implies that there will always be two groups: the haves and the have-nots. It also creates hostility and competition between people who could band together and insist on a universal public system. Arguing about who deserves healthcare is fool’s errand because it’s a trick question. Everyone deserves healthcare.
Wellness culture as a whole seems much happier to profit off the broken American system than to support solutions. The industry’s economics are built to serve an individualist approach to health, and this is reflected in its messaging: nothing is more important than your health; ignore anyone who tells you otherwise; discard of everyone who does not contribute to your self-optimization. For the chronically ill, who have often experienced a devastating loss of personal agency, this can be alluring. But on the other side of that coin is the isolation of illness, the way we curl up on our own little islands of blue light, pasting affirmations to our mirrors, trying to be our own doctors. And I implore you, for the sake of your loved ones and neighbours and strangers you’ll never meet: let us dream bigger than that.
Thank you for this excellent article. I’m glad that you have a diagnosis and that you are hopefully working with your health care providers to get the best quality of life possible in your situation.
As a former health care worker, I want to mention that alternative or complementary therapies are not without downsides. First, stating the obvious, there’s the cost in both time and money. Second, there’s the fact that people may delay getting help from an evidence based healthcare practitioner while they explore ineffective alternatives. Third, there’s the possibility that the alternative therapy may have an adverse impact on the person’s health, potentially compounding the issues they already have or giving them altogether new health issues. (Some alternative therapies are far from innocuous.) Fourth, it’s possible that some of the therapies are sourced unethically, as is the case with rhino horn or shark fin, for instance.
People who raise the possibility that an ineffective therapy could at the very least offer a placebo effect miss all of these critical points.
I’m sad that for profit healthcare systems still exist in wealthy countries and I agree that this needs to be the focus of the fight for better health care. Meanwhile, countries with public healthcare systems need citizens who work to protect and even expand them, while supporting the people who do the work.
“Conceiving of healthcare as a privilege obscures the fact that it is a human right. Privilege discourse implies that there will always be two groups: the haves and the have-nots. It also creates hostility and competition between people who could band together and insist on a universal public system. Arguing about who deserves healthcare is fool’s errand because it’s a trick question. Everyone deserves healthcare.”
The division is the point, as it is with all discussions of privilege in a social justice context. Framing things in terms of privilege also implies that the privilege could be taken away. It suggests an authoritarian parent-child relationship.
“White privilege” is being treated like a citizen with rights. This isn’t a privilege, it’s a right. By framing it in terms of white privilege to be “dismantled” instead of rights to be gained for minorities, you are priming for a solution that involves removing rights and freedoms from rights rather than gaining them for society as a whole. Everyone loses.
You better behave, or mommy will take away your cellphone privileges!