A Letter About Mental Illness, Family Silences and the Medical Manufacture of Disease

22/06/2017

From the 'Restore Sanity' rally in DC. Credit: S Pakhrin/Flickr CC BY 2.0

My psychiatric condition was (mis)treated as if it were independent of a malarial prophylactic called mefloquine that I had accidentally overdosed on by a single potent pill.

In the wake of increasing awareness in India about the need for public conversations on the subject of mental illness, it is consistent with the regime of medical expertise that the overriding emphasis of these conversations has been about the science of the hormones and neurotransmitters that regulate emotions, and the chemicals that can cause imbalances in these substances. There have been very few first-person accounts in India about mental illness, or about the combination of specifically regional social factors at whose effect mentally ill people in India find themselves. The conversations about mental illness in India’s print and electronic public sphere are uni-dimensional because besides the rare celebrity who speaks for herself, everyone else with mental illness in India is mostly “spoken for” by doctors, parents and other well-meaning “experts”. I see the urgent need for a variety of conversations on the topic of mental illness – not just from a neurochemical or strictly medical perspective, but also from the perspective of those who experience illness and learn to battle it, as well as from medical anthropologists and other social scientists and medical humanists who study illness within the broader and interacting contexts of the historical, social, political and economic.

It is no secret to those of us who have experienced illness of any sort, and then sought treatment by “Western medicine”, that we are all in a sense humbled by inexact knowledge of our bodies. The infinite, ever-in-flux, metabolic interactions that keep us alive, that keep our hearts beating to the strange and comforting thum-thum of vital music, are incomprehensible to us in their contingency, their delicacy, and the enigma of their very possibility. Let us make no mistake: the study of medicine and human physiology is the study of the wondrous and ever-unraveling, ever-concealing maya of the universe within us. Yet, it is no secret to those of us who have experienced illness, and then sought treatment by “Western medicine”, that the apprehension of the beauty of our bodies – their fragility and resilience – is powerfully connected with a top-down and often abstruse regime of expertise that exercises control over our imaginations with occult force. Expertise is everywhere around us, and is everywhere connected with power. The technocrats, the engineers, the educationists with their PhDs, the doctors, the lawyers, and the hedge-fund managers, all command our attention, and steer our ways of looking at the world. But the regime of medical expertise is the regime of expertise that most intimately impinges on our health and well-being, and so in a sense, is one that creates a structure of inequality between the specialist and the layperson which has no parallel. This is especially so with regard to the practice of “Western medicine” – an encompassing term that I use here to denote a range of systematised methods to understand the body, explain the etiology of its illnesses, and then “treat” these illnesses – which has achieved mostly unchallenged hegemonic status in our globalised world.

Given that every person who has lived a life experiences illness, and that every ill person must embark on a journey of recovery and discovery if she is to continue living, it is remarkable that such few personal narratives of illness make it through to the popular press. There is therefore a deeper inequality of knowledge and expertise at work than most of us care to admit. Not only is the practice of “Western medicine” sustained through an acceptance that the ill person must submit her body to the knowledge of an expert, who may then retail information about her body to other colleagues and “experts”, but the stories that are told about illness through the channels of mass media also mirror this principle. In a sense, an ill person gives over to her doctor not just control over her body, but also the right to control its story and explain its malaise. The ill person thus serves as an instrument for “scientific” demonstration, a ventriloquist’s dummy. This effective termination of a “patient’s” rights to speak for herself is, of course, much more in evidence in the case of mental illness because – short of doing a radically invasive surgical examination via a lobotomy – brain tissue and neurochemistry still remain more in the realm of the unknown (and therefore more than ever in the realm of the mysterious, the occult, and the poetic). It cannot any more be ignored that there are domains within medicine that do not rely on strictly objective or measurable parameters. Psychiatry is one of these domains. It is clearly manifest to me that a person once diagnosed as having a mental illness is from that point on irrevocably at the mercy of the psychiatrist’s particular and subjective standards of “normality” and “deviance”, which may or may not correspond with wider social prescriptions for the same, and most likely do not correspond with the latitude of experiences within the “normal range” for that society. In other words, in its emphasis on “normality”, psychiatry is an overwhelmingly “normative” domain of medicine, but one that is paradoxically premised on subjective, if not whimsical, criteria.

I experienced a case of acute psychosis in late 2014, while doing anthropological fieldwork in a village in the district of Rayagada, Odisha. It took me until early 2017 to recover a sense of full normality and to regain composure and self-respect. This was partly because my psychiatric condition was treated – much the same way that so many illnesses are treated by “Western medicine” – as if it were isolated from underlying and structural stress factors, and more importantly, as if it were independent of a malarial prophylactic called mefloquine that I had been taking for months together and that I had accidentally overdosed on by a single potent pill. In the years since I was first hospitalised and – to put it simply – mistreated, I have had the chance to reorient myself to the concept of illness generally, and to the exceptional nature of psychiatric illness in particular. I have come across and read some of the ample scientific and journalistic literature about the severe neuropsychiatric effects of the drug mefloquine not on a tiny proportion of its users, but on a whopping 67% of its users. The frightening callousness of the medical community about this drug, and their reckless belief in its benign efficiency in spite of compelling empirical evidence to the contrary, makes me concerned that my condition might replicate itself in others with tragic consequences.

Lariam/mefloquine. Credit: Bongoman/CC BY-SA 3.0

A few days ago, I wrote an email to my uncle, a doctor in the Indian Army who, in a strange twist of fate, had advised me to take the malarial prophylactic mefloquine in 2014. When I had asked him, before taking the drug, what side effects I could expect, he said that its worst known side effect was “vivid dreams”. In my email to him, I speak about my personal journey of illness and convalescence, and my hard fight to resume loving and respecting myself. But I also comment on and provide links to information about the suspicious circumstances of the drug’s release, and its connections with Big Pharma profiteering, war, suicide, homicide and brain damage. As the email does not name or implicate particular individuals, I have chosen to publish it in a manner that retains its epistolary, confiding style. This involved overcoming an ethical quandary that is perhaps unique to the structure and implicit hierarchy of Indian families. My uncle is elder to me, and is well regarded within my family, as well as within his professional circle. He advised me to take the drug mefloquine in what is called “good faith”, a phrase that in this particular case amounts to his having trusted the word of his doctor colleagues about the drug’s suitability for my use without doing his own research. I have one important reason for publishing the email itself, rather than a summary of it. This is that I want to bring to light the difficulties that arise when one’s medical advisors are family members and when the overwhelming climate in the family is to hush up the occurrence of such illness and behave as though it had more to do with “misfortune” than with negligence. Relatedly, I want to propose one means by which those of us who experience colossal and incomprehensible illness can address issues of family complicity, silences and stigma through language, and through the direct address of correspondence. Since my family members, friends and colleagues all know that I experienced mental illness but do not know of its depth and duration, or of the specific factors that caused and precipitated it and the chequered history of the drug mefloquine, I see this act of writing and publishing a personal account of my illness as a means to balance the scale of stories that are told, re-told, harvested and shared.

In keeping with my intention to address the overlapping silences and complacency of the family and of the medical establishment, the rest of this article is framed as an appeal to the uncle-doctor who represents the node between the intimate crucible of the family, and the often clinically distant world of doctors and medical “experts”:

Uncle, over two years have passed since I sent you the article about a man’s vivid first-person account of his experience of Lariam/mefloquine-induced psychosis. There was a certain spirit in which I sent you and my parents that article. I had wanted to communicate to the three of you what I had been through – but as importantly, I had wanted to communicate that I am not the only person to have reacted adversely to that particular drug. All people who undergo uncommon illness or trauma, I think, have the need to connect with similar stories as theirs in order to make sense of their experience and feel less alone.

Needless to say, the psychotic episode itself was, in retrospect, not the worst of things to happen to me. The deepest irony of my story is that I was “treated” by the same medical establishment that had caused the condition in the first place. My “treatment” radically revealed to me (even then, through the haze of anti-psychotics that I was being force-fed) that people with psychiatric ailments cannot represent their own selves in a way that they will be taken seriously. I was immediately infantilised, and even though I was conscious of what was being done to me, and conscious of the fact that my repeated demands for more information and transparency were being denied by doctors, nurses, and to an extent, even my closest relatives, my articulations of frustration and anguish were not considered. Indeed, when I expressed my frustration, this was seen as further confirmation of my albeit temporary insanity. This was my first exposure to a state that many find themselves in permanently on account of their social position in our society: the so-called ‘subalterns’, who are not heard when they speak, and whose stories are written by well-meaning interlocutors.

The psychiatrists in Bhubaneswar, as well as the psychiatrist who treated me in Goa, asked my parents more than once whether there is a history of psychosis in my family. There is no evidence of this heritage, at least none that I can trace. For the 23.5 years I had lived before I began consuming mefloquine I had never once experienced symptoms that were anything like those that I experienced under its influence. I have no history of depression. And while it may be argued that these conditions can manifest later in life, I want to point out that both in school and in college, quite a few of my classmates had mental disorders of various kinds, and even more experienced depression. So perhaps 23 years is not so short a span that the term “medical history” has no import.

None of the Indian doctors or psychiatrists I spoke with said that mefloquine can be conclusively faulted. This may be because, as several journalistic reports and some articles in medical journals indicate, randomised Phase III clinical trials of Lariam/mefloquine were never conducted on humans, and Phase I and Phase II trials were never conducted on healthy civilian subjects. Thus, as one commentator puts it, its “consumers have been unwitting recruits to this longitudinal study, rather than informed partners”. The literature strongly suggests that this is because mefloquine’s history is tied to what is called the military-industrial complex. Its origins are in war research, and its most terrifying abuse stems from its distribution among military contingents the world over (thus it is consistent that your doctor colleagues who work in the Indian army, as you say, routinely prescribe it to soldiers and other army staff that are deployed in Northeast India, among other places). I have frequently been told that my reaction to the drug was somehow “idiosyncratic”, meaning that I was an outlier. However, there is documentation to suggest that 67% of users of mefloquine experience adverse side-effects. Some of these users developed symptoms that were far more serious even than mine, and I will provide links below to their stories, in case you haven’t already read about them.

I stopped taking my “anti-psychotic medication” in October 2016, after consulting with my psychiatrist – which is to say that I was a thoroughly obedient patient. By that time, I had taken the medication for two years. Looking back, I see now that if the term ‘illness’ is broadly defined as a state in which a person does not feel normal, and in which a person’s normal capacities are curtailed, the illness I experienced lasted until early 2017. In the two weeks immediately following my “rescue” from the village in Odisha, and rapid transport to a psychiatric ward in Bhubaneswar, I gained six kilograms of body weight. At a height of 5 feet and 8 inches, I had weighed 54 kilograms at the time of my breakdown and subsequent “rescue”. While being administered the cocktail of drugs that were constantly and absurdly concealed through dissolution in sickeningly sweet liquids, I experienced an extreme and unusual craving for chocolate and all manner of sweets. I would consume every sugary item that came my way in large quantities, and often demand more from my parents, who, not knowing better, would readily oblige. Months later, Uncle, you congratulated me on looking “chubby”, and when I expressed dismay, said to me that I had been too thin before, and that the additional weight suited me. The concern was not with whether I had wanted to put on weight in the first place, and if so, on what terms I wanted to put on weight and at what pace.

My own sense is that while the drug mefloquine had dangerously enhanced my normal capacity of creative and imaginative thinking, the “anti-psychotic medication” I was made to take abruptly truncated this otherwise normal capacity. The consequence was that I experienced not only drowsiness, exhaustion, and mental torpor on a daily basis, but I also found it much more difficult to read and comprehend academic writing. Further, I found it difficult to write with the ease I was used to, thus signalling quite serious cognitive impairment for the period of time that I was on “treatment”. Once again, in my psychiatric “treatment”, I was not informed about the consequences of the medication on my mind, body, and well-being. It is only now, in reading about the drugs Olanzapine and Aripiprazole that I was made to consume for nearly two years, that I have come to comprehend the flukey nature of psychiatric experimentation, which is what all psychiatric “treatment” amounts to in the end.

Credit: Hey Paul Studios/Flickr CC BY 2.0

We – by which I mean you and I – have never spoken about the topic of my illness and how it was induced except once, when I was in Goa convalescing, and when you had called on the phone to enquire after my health. Partly, I suppose, this is because – as with any medical condition that is stigmatised – people try not to broach the subject of the person’s illness out of concern for that person’s feelings. In turn, I have not broached the subject with you partly because I didn’t want to seem like I was implicating you, but also because speaking about the illness is still somewhat difficult for me, and possibly touchy for you. When I speak about my illness with my parents they usually tell me to move on or leave that episode behind me. They say this especially when I express anger at the members of the medical community in India that I encountered in the course of “treatment”. I too believe that I need to move on, but the question arises, ‘what does it mean to move on?’ To me, moving on does not mean sweeping the past under the carpet and pretending that I have had no history of illness or mistreatment. I feel increasingly like the act of moving on must entail joining with a larger group of activists who are protesting against the continued prescription of drugs like Lariam/mefloquine and calling for increased awareness about their long-term and understudied side-effects. It is in this spirit that I write to you. In the course of my reading I have come across several astonishing articles, reports, and first-person accounts about the history of mefloquine, as well as its connections with Big Pharma profiteering, wars, homicide, suicide, debilitating brain damage, prolonged neurotoxicity, and what the medical establishment perhaps all too quickly labels “psychosis”. As one author (writing about his experience of using the drug) summarises, “The side effects leave no visible scars, no objective damage. But if Lariam were a car, if psychological or neurological side effects were as visible as broken bones, it would have been pulled from the market years ago.”

The doctors who counseled you about mefloquine had said that the worst side effect would be “vivid dreams”. What I experienced cannot even euphemistically be described as vivid dreams. And I am not alone, nor am I an outlier. I urge you to read the articles I provide links to, study their compelling empirical evidence, and to share them with the doctors who suggested that I use the drug, as well as with others who may still be prescribing the drug to people without telling them about the attendant risks and seeking their informed consent. Here, perhaps more than ever, it is important to recognise the full meaning of informed consent with all its ethical and philosophical implications, and to actively consult the patient about what she wants from her treatment, as well as to detail alternatives to the “treatment” thus prescribed. These alternatives, if they are to be true alternatives, must also present options outside the cynical binaries of our presently capitalist-complicit medical and pharmaceutical establishment that rules the world of human bodies with numbing brutality.

While the articles below constitute a sample of the extensive and no doubt conflicting lay and medical opinions that exist on the topic of mefloquine, my intention is to introduce a dose of uncertainty into the minds of medical practitioners who prescribe the drug. I hope that this uncertainty will be just sufficient for them to acknowledge the urgent need to weigh the possible pros of mefloquine’s prophylactic properties, with the serious risks entailed in its consumption. This has to do fundamentally with recalling the Hippocratic oath and a doctor’s sworn duty to prevent or cure disease holistically, and as far as possible without inducing further diseases. The anger and sadness I feel at how I was “treated” derives not as much from the fact that I had a bad experience with mefloquine, but with the fact that I was not remotely informed about the nature and severity of side-effects associated with the drug, or even of the nature and severity of side-effects associated with the anti-psychotics I was subsequently made to take.

Journalistic sources: