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What Morgellons Disease Teaches Us about Empathy

photograph of hand lined with ants

For better or for worse, COVID-19 has made conditions ripe for hypochondria. Recent studies show a growing aversion to contagion, even as critics like Derek Thompson decry what he calls “the theater of hygiene,” the soothing but performative (and mostly ineffectual) obsession with sanitizing every surface we touch. Most are, not unjustifiably, terrified of contracting real diseases, but for nearly two decades, a small fraction of Americans have battled an unreal condition with just as much fervor and anxiety as the contemporary hypochondriac. This affliction is known as Morgellons, and it provides a fascinating study in the limits of empathy, epistemology, and modern medical science. How do you treat an illness that does not exist, and is it even ethical to provide treatment, knowing it might entrench your patient further in their delusion?

Those who suffer from Morgellons report a nebulous cluster of symptoms, but the overarching theme is invasion. They describe (and document extensively, often obsessively) colorful fibers and flecks of crystal sprouting from their skin. Others report the sensation of insects or unidentifiable parasites crawling through their body, and some hunt for mysterious lesions only visible beneath a microscope. All of these symptoms are accompanied by extreme emotional distress, which is only exacerbated by the skepticism and even derision of medical professionals.

In 2001, stay-at-home mother Mary Leiato noticed strange growths on her toddler’s mouth. She initially turned to medical professionals for answers, but they couldn’t find anything wrong with the boy, and one eventually suggested that she might be suffering from Munchausen’s-by-proxy. She rejected this diagnosis, and began trawling through historical sources for anything that resembled her son’s condition. Leiato eventually stumbled across 17th-century English doctor and polymath Sir Thomas Browne, who offhandedly describes in a letter to a friend “’that Endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh hairs on their Backs, which takes off the unquiet Symptoms of the Disease, and delivers them from Coughs and Convulsions.” Leiato published a book on her experiences in 2002, and others who suffered from a similar condition were brought together for the first time. This burgeoning community found a home in online forums and chat rooms. In 2006, the Charles E. Holman foundation, which describes itself as a “grassroots activist organization that supports research, education, diagnosis, and treatment of Morgellons disease,” began hosting in-person conferences for Morgies, as some who suffer from Morgellons affectionately themselves. Joni Mitchell is perhaps the most famous of the afflicted, but it’s difficult to say exactly how many people have this condition.

No peer-reviewed study has been able to conclusively prove the disease is real. When fibers are analyzed, they’re found to be from sweaters and t-shirts. A brief 2015 essay on the treatment of delusional parasitism published by the British Medical Journal notes that Morgellons usually appears at the nexus between mental illness, substance abuse, and other underlying neurological disorders. But that doesn’t necessarily mean the ailment isn’t “real.” When we call a disease real, we mean that it has an identifiable biological cause, usually a parasite or bacterium, something that will show up in blood tests and X-rays. Mental illness is far more difficult to prove than a parasitic infestation, but no less real for that.

In a 2010 book on culturally-specific mental illness, Ethan Watt interviewed medical anthropologist Janet Hunter Jenkins, who explained to him that “a culture provides its members with an available repertoire of affective and behavioural responses to the human condition, including illness.” For example, Victorian women suffering from “female hysteria” exhibited symptoms like fainting, increased sexual desire, and anxiety because those symptoms indicated distress in a way that made their pain legible to culturally-legitimated medical institutions. This does not mean mental illness is a conscious performance that we can stop at any time; it’s more of a cipherous language that the unconscious mind uses to outwardly manifest distress.

What suffering does Morgellons make manifest? We might say that the condition indicates a fear of losing bodily autonomy, or a perceived porous boundary between self and other. Those who experience substance abuse often feel like their body is not their own, which further solidifies the link between Morgellons and addiction. Of course, one can interpret these fibers and crystals to death, and this kind of analysis can only take us so far; it may not be helpful to those actually suffering. Regardless of what they mean, the emergence of strange foreign objects from the skin is often experienced as a relief. In her deeply empathetic essay on Morgellons, writer Leslie Jamison explains in Sir Thomas Browne account, outward signs of Morgellons were a boon to the afflicted. “Physical symptoms,” Jamison says, “can offer their own form of relief—they make suffering visible.” Morgellons provides physical proof of that something is wrong without forcing the afflicted to view themselves as mentally ill, which is perhaps why some cling so tenaciously to the label.

Medical literature has attempted to grapple with this deeply-rooted sense of identification. The 2015 essay from the British Medical Journal recommends recruiting the patient’s friends and family to create a treatment plan. It also advises doctors not to validate or completely dispel their patient’s delusion, and provides brief scripts that accomplish that end. In short, they must “acknowledge that the patient has the right to have a different opinion to you, but also that he or she shall acknowledge that you have the same right.” This essay makes evident the difficulties doctors face when they encounter Morgellons, but its emphasis on empathy is important to highlight.

In many ways, the story of Morgellons runs parallel to the rise of the anti-vaccination movement. Both groups were spear-headed by mothers with a deep distrust of medical professionals, both have fostered a sense of community and shared identity amongst the afflicted, and both legitimate themselves through faux-scientific conferences. The issue of bodily autonomy is at the heart of each movement, as well as an epistemic challenge to medical science. And of course, both movements have attracted charlatans and snake-oil salesmen, looking to make a cheap buck off expensive magnetic bracelets and other high-tech panaceas. While the anti-vaxx movement is by far the most visible and dangerous of the two, these movements test the limits of our empathy. We can acknowledge that people (especially from minority communities, who have historically been mistreated by the medical establishment) have good reason to mistrust doctors, and try to acknowledge their pain while also embracing medical science. Ultimately, the story of Morgellons may provide a valuable roadmap for doctors attempting to combat vaccine misinformation.

As Jamison says, Morgellons disease forces us to ask “what kinds of reality are considered prerequisites for compassion. It’s about this strange sympathetic limbo: Is it wrong to speak of empathy when you trust the fact of suffering but not the source?” These are worthwhile questions for those within and without the medical profession, as we all inevitably bump up against other realities that differ from our own.

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Panic Buying and the Virtue of Compassion

black and white photograph of old and young hands touching

As the novel coronavirus, COVID-19, spreads around the globe, the prospect of more communities, cities, whole regions and countries going into lockdown is becoming a reality.

As I write this, in Australia mass gatherings are banned, travel restrictions are being introduced and a 14-day self-quarantine for anyone entering from overseas is being instituted. Yet even several weeks ago, before the mass cancellation of events and activities, one of a myriad of ‘effects’ of the epidemic in Australia has been a massive toilet paper shortage.

In many places around the country, especially the major cities, large supermarkets and grocery store shelves have been emptied. It is unclear exactly how this started; but once a view, and a concern, had formed in the community that there would be shortages of toilet paper people began to panic-buy and stockpile it. In so doing those people have created shortages which have in turn led to further panic and rushes on stocks as soon as they are replenished. This kind of panic-buying (a problem encountered also in other countries) has also affected many other grocery items and medical supplies, and concerns have been raised about whether some of the most vulnerable members of the community are missing out on essentials as panic buying and stockpiling continues. In response, as of yesterday, Australian supermarkets have now introduced purchase limits on certain items to prevent stockpiling at the expense of others.

It is often said, and often seen, that times of tragedy and trouble, bring us together, and bring out the best in us. We have witnessed many times (for example in the recent bushfire crisis in Australia) people coming together, cooperating, and helping one another in times of disaster sometimes at great personal risk.

These moments are often thought of as a kind of moral test. Though we do encounter the best of ourselves, and the best – most virtuous – moral reflection of human behaviour in such moments, the opposite can also be true.

A video which appeared on social media and then on mainstream news outlets last week of people fighting in a shopping centre over toilet paper illustrates what it can look like when people think of their struggle as competitive rather than cooperative – when people believe they must struggle against, rather than with, others.

In the video, one person has a large shopping cart piled high with packets of toilet paper and can be seen driving her cart away from an isle whose shelves are completely empty. A second person approaches, asks for one packet from the full trolley, and upon being refused, a physical fight ensues, in which two other parties promptly intervene.

The point of the example is not to show these particular people up, but to point out that this moment, and others like it not filmed and disseminated, represents the antithesis to the virtues of generosity and cooperation that are the markers of our ‘better natures’ and traits that we, as a community and a society, rely upon in times of crisis or trouble.

When we say something like “these are testing times” we mean that we may be tested in all sorts of ways – physically, emotionally, psychologically, socially, morally. Perhaps there is a sense here also of that test being able to tell us something about what we, as humans, are really like.

Many of the questions we unpack and debate in moral philosophy concern, at bottom, views about what human nature, essentially, is like: whether, for instance, we are more naturally altruistic or self-interested by nature.

It is clear even to a casual observer of the human condition there is a spectrum – of people, of actions, and contexts – between self-interest and altruism. We also know there are psychologically complex reasons for people to behave in certain ways in particular situations. It is a difficult question to answer – how separate should we should think of moral reasons as being from other sorts of reasons? Even so, the moral test presented by times of crisis and trouble is doubly significant as a test of our societal ethical values and those of our personal character.

Aristotle, in his treatise on ethics, made the cultivation of personal virtues central to the question of what constitutes an ethical life. The virtues are traits that belong to and are exercised by individuals. Importantly, they are acquired by practice in a process Aristotle called ‘habituation’ by which one learns to be virtuous by practicing virtue in a similar way to the learning of a musical instrument by playing it. He thought of the ethical life as a craft: learned and perfected through practice, rather than issuing from a set of rules.

Hoarding and scrapping, as captured on the film, is clearly not the kind of virtuous behavior that will help us to get through times of trouble and help us to emerge as a strong community. Behavior that issues from the self-interested, individualistic realms of human nature has its place in dystopian apocalyptic fiction, but such fiction foreshadows for us a possible reality.

As things currently stand, the public has been notified that essential supplies are not going to run out, therefore stockpiling toilet paper, and other grocery items, is irrational. Yet people are driven by panic and mistrust to continue to hoard. The appropriate moral response requires us to strengthen our character and that of our society against such impulsive behavior and to foster trust and listen to reason. We are rational creatures, and we are better when we use our reason – which suggests that our morality is related in important ways to our capacity for reason.

But there is something else – by which I do not mean something different from reason but something in addition to it – which we need for the moral life. Compassion. We need to cultivate, through a kind of ‘moral imagination’ the ability to see ourselves in the situation of another. We need to not make exceptions of ourselves, but to see in our own plight, that of the other. These capacities are fostered in the practical virtues of generosity and cooperation. Now is a good time to be practicing these virtues. We will need them for what lies ahead.

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Mindfulness, Capitalism, and the Ethics of Compassion

photograph of person meditating before dawn

Mindfulness, a meditation technique lifted from Buddhist practice, has gained popularity in recent years, especially in the corporate world, as a means to combat stress and improve personal performance. The practice promises to relieve anxiety associated with the pressures of modern life. Indeed, not only are our work lives often more demanding and less secure, we live in a 24-hour news cycle and among frenetic social media activity from which many people are finding it increasingly difficult to retreat. All this activity has negative consequences for our concentration, mental acuity, and general well-being. We also live in a time of rising inequality, of epidemics of stress, anxiety and other mental health issues; and in which politics is bitterly divided and people’s trust in politicians is at very low ebb. We live in a time in which the problems caused by neoliberal capitalism’s rapacious activity are coming home to roost as we sit at the brink of ecological collapse. It is natural for people to seek succor.

Practicing mindfulness involves focusing one’s attention on one’s immediate surroundings, sounds, and sensations, with the purpose of drawing the mind out of its busy chatter, and its anxious worry, and focusing only on the immediate present and the immediate surroundings: “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future.”

But what are the ethics of something that promises succor without addressing the destructive injustices of capitalism that are causing the problems in the first place?

Take the climate emergency – we are at the beginning of, and falling increasingly into the grip of, a man-made catastrophe. Here in Australia the summer has barely begun and already a drought ravaged area the size of Albania has been razed by fires, more than eighty of which are still burning as Sydney, the largest city, is blanketed in toxic smoke. If we aren’t feeling anxious we should be – and if we aren’t focused on the future, we ought to. Used as a method of easing the anxiety of climate catastrophe, mindfulness threatens to contribute to the problem by shifting the focus from action to management; from state responsibility for action to individual burden of amelioration.

The origins of mindfulness are in Buddhist practice, where letting go of the ego’s desires and worldly attachments opens one to a greater connectedness with the world’s other beings. The form of this connection is compassion. Yet the popular Western-appropriated version of mindfulness being practiced increasingly in the corporate world appears to be moving in the opposite direction of compassion. Mindfulness is touted as a cure for modern ills like anxiety, yet rather than cure them, it is a technique of evasion; rather than being focused on connectedness, it reinforces ego by centering on self-improvement.

The use of mindfulness as stress relief in corporate institutions helps corporations avoid responsibility for the environments, detrimental to mental well-being, they create; and tries to shift the burden away from the toxic system back onto the individual. It is therefore unsurprising that mindfulness has been appropriated by the corporate world.

Bhikkhu Bodhi, an outspoken Western Buddhist monk, has warned that “absent a sharp social critique, Buddhist practices could easily be used to justify and stabilize the status quo, becoming a reinforcement of consumer capitalism.”

Compassion is not central to post-enlightenment Western philosophy in the same way it is in some religious ethics such as Buddhism. The Western tradition tends to distrust emotion in morals, because the moral life is taken to be is centered around decision-making and emotions are thought not to be a solid basis for rational action.

But compassion can be found in different kinds of appeals to the universal nature of ethics that most normative theories make. There is a form of the ‘golden rule’ – the moral rule that states one ought to treat others as one would want to be treated – present, for example, in both deontological and utilitarian styles of normative moral theory.

This indicates the presence of a general principle of ethics – that it is universal. In Utilitarianism this principle dictates that each stakeholders’ preferences are considered equally. In deontological theories, such as rights-based ethics, it dictates that rights are universal and inalienable. These demands of ethics are other-centered, and require us to make decisions in the interests of, say, justice rather than in the self-interest.

In terms of western normative ethical theories, mindfulness in its original Buddhist form is akin to virtue ethics in which the agent’s character is at issue, and ethics is centered around the virtues of good character which enable and contribute to the good life.

As David Loy, in a famous article called Beyond McMindfulness, wrote:

“mindfulness is a distinct quality of attention that is dependent upon and influenced by many other factors: the nature of our thoughts, speech and actions; our way of making a living; and our efforts to avoid unwholesome and unskillful behaviors, while developing those that are conducive to wise action, social harmony, and compassion.”

Here we see that mindfulness is meant to be an ethical position, which one takes up in order to develop, but to develop in an ethical, that is, other-centered direction.

Mindfulness should be about a quality of awareness, a kind of attunement that is by its nature ethically in the world. Using it for self-improvement, without compassion or social conscience, distorts its nature.

Perhaps mindfulness creates a much-needed reflective space in life. But perhaps, rather than use that space for the avoidance of thought, it should be used for a reflective kind of attention than everyday life permits.

Buddhist philosophy is about overcoming ego – and ego is at home in capitalism – or rather, capitalism is at home in the ego. Capitalism depends upon the restless ego seeking and finding momentary satisfaction of desire by consumption; and it depends upon that satisfaction being soon superseded by another desire that can in turn be satisfied by another consumption. But capitalism is in crisis as we reach the endgame in the climate and ecological emergency. Corporate mindfulness is a way of easing the anxiety without interfering with the capitalist machine. Then individuals can feel better, and business can carry on as usual. But it is a case of merely treating the symptom while allowing the disease to run rampant.

If, as I believe it is, the climate crisis is a crisis of capitalism, the role of alienation is central – alienation from each other and from the natural world. From this point of view, our alienation from these spheres is what has caused the crisis in the first place. Compassion is a possible way back to the ethical dimensions of our interconnectedness. But that cannot be found in the western-appropriated practice of mindfulness.

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The Moral Quandary of Testing on Animals

Photo of three rats in a cage with a little red house and food and water available

The topic of testing on animals as a form of scientific research has been contentious for quite some time. In most cases, the discussion tends to focus on whether it is morally permissible to test various products and procedures on animals in order to determine whether they would be safe and beneficial for human use. Animal experimentation is not always conducted simply for the benefit of human beings—sometimes the parties that stand to benefit from the research are other non-human animals, often including other members of the same species as the animals being tested.

Defenders of the practice of testing on animals for the benefit of humans argue that the benefits for humans substantially outweigh the harms incurred by animals. Some argue that our moral obligations extend only to other members of the moral community. Among other things, members of the moral community can recognize the nature of rights and obligations and are capable of being motivated to act on the basis of moral reasons. Non-human animals, because they are not capable of these kinds of reflections, are not members of the moral community. As such, defenders of animals testing argue, they don’t have rights. In response, critics argue that if we only have obligations to beings that can recognize the nature of moral obligations, then we don’t have obligations to very young children or to permanently mentally disabled humans, and this idea is morally indefensible.

Other defenders of animal testing argue that it is both natural and proper for human beings to exercise dominion over animals. These arguments take more than one form. Some people who make this argument are motivated by passages from the Bible. Genesis 1:26 reads, “And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.” Some argue that this passage suggests that humans have divine permission to use animals as they see fit. The use of animals for the benefit of humans seems morally defensible to these people for this reason.

Others argue human dominion over other animals is appropriate because human beings have demonstrated their superiority over non-human animals. We are no different from other animals in the sense that we use our natural skills to climb as high on the food chain as our circumstance permit. As rational creatures, our needs extend farther than the needs of non-human animals. As a result, we can use non-human animals to solve a wider range of problems. We can use them not only for protein, but to make our lives longer, better, more beautiful, and more convenient. Critics of such a view argue that might doesn’t make right. What’s more, our enhanced rational capacities also give us the ability to make moral judgments, and these moral judgments should extend to compassion for the suffering of all living creatures.

Arguments against research on animals also come in a variety of forms. One approach focuses on suffering. Famously, Peter Singer argued that what makes a being deserving of moral consideration is their capacity to suffer. If we treat equal amounts of suffering unequally simply because of the species to which the animal happens to belong, our behavior is speciesist—we are taking seriously considerations that are morally irrelevant. Rights based approaches, like the one argued by Tom Regan point out that non-human animals are subjects of lives. There is something it is like for them to experience the world in the unique way that they do. In light of this, we should recognize that non-human animals have intrinsic value and they should not be used as objects to be manipulated for the benefit of human beings.

How should we assess the situation when the research done on non-human animals is done, not for the benefit of human beings, but for the benefit of other non-human animals? In these cases, one major criticism of testing disappears—researchers can’t be accused of failing to take the interests of non-human animals seriously. After all, concern for the interests of non-human animals is what motivates this research to begin with. Vaccines for rabies, canine parvovirus, distemper, and feline leukemia virus have been developed through the use of animal research. These critical procedures improve and even save the lives of non-human animals. When we engage in a consequentialist assessment of the practice, testing on non-human animals for the benefit of other non-human animals seems justified.

On the other hand, it may be that speciesism is rearing its ugly head again in this case. Consider a parallel case in which research was being conducted for the good of human beings. Imagine that a tremendous amount of good could be done for human beings at large if we tested a particular product on a human being. The testing of this product would cause tremendous physical pain to the human being, and may even cause their death. Presumably, we would not think that it is justified to experiment on the human. The ends do not justify the means.  

One might think that one major difference between the case of testing on humans and the case of testing on animals is that humans are capable of giving consent and animals are not. So, on this view, if we kidnap a human for the purposes of experimenting on her to achieve some greater good, what we have done wrong, is, in part, violating the autonomy of the individual. Animals aren’t capable of giving consent, so it is not possible to violate their autonomy in this way.  

Under the microscope, this way of carving up the situation doesn’t track our ordinary discourse about consent. It is, of course, true, that humans are free to use freely (within limits) certain things that are incapable of giving consent. For example, humans can use grain and stone and so on without fear of violating any important moral principle. In other cases in which consent is not possible, we tend to have very different intuitions. Very young children, for example, aren’t capable of consent, and for that very reason we tend to think it is not morally permissible for us to use them as mere means to our own ends. Beings that are conscious but are incapable of giving consent seem worthy of special protection. So it seems wrong to test on them even if it is for the good of their own species. Is it speciesist to think that the ends can’t justify the means in the case of the unwilling human subject but not in the case of the unwilling non-human animal?

Testing on non-human animals for the sake of other non-human animals also raises other sets of unique moral concerns and questions. What is the proper rank ordering of moral obligations when the stakeholders are abstractions? Imagine that we are considering doing an experiment on Coco the chimpanzee. The experiment that we do on Coco might have implications for future chimpanzees with Coco’s condition. The research might, then, have a beneficial impact for Coco’s species—the species “chimpanzee.” Can the moral obligations that we have to concrete, suffering beings ever be outweighed by obligations that we have to abstractions like “future generations” or “survival of the species”?

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Trump’s America Needs a Buddhist Ethics of Care

In the beginning weeks of Donald Trump’s presidency, people of all faiths all over the world are asking the question, “How should our faith respond?” Buddhists are no exception to this. With important religious precepts centered on nonviolence and compassion, Buddhists are asking how they can apply their code of ethics to help those in need. Unique from other religions like Christianity and Islam, Buddhist texts and teachings make little reference to organized political or social activism. However, past historical figures like Mahatma Gandhi have used Buddhist precepts to dramatically change society. Gandhi used the profound principle of ahimsa, or nonviolence, to dismantle the British occupation of India. Once again, a turn to Buddhist principles is needed to encourage compassion in the unfolding months ahead.

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