A Conversation About Demedicalization and Disorders
Let's talk about demedicalization. What is demedicalization? The Open Education Sociology Dictionary defines demedicalization as "The process by which a behavior or condition, once labeled 'sick', becomes defined as natural or normal." It is the process of normalizing a trait of the body or brain or behavior as a normal variance of human existence, rather than a pathological variance in need of treatment or correction.
Put simply, it is no longer looking at something as a sickness in need of treatment, but rather just another way of existing.
Some background info that is needed: the social and medical models of disability.
The medical model posits that the existence of disability is predicated on inherent pathological differences in the bodymind, that it is active physical limitations, some of which can be treated or "corrected", that make a person disabled.
The social model, on the other hand, states that is is a societal lack of access and accommodations that disables a person, and that a person would no longer be functionally disabled were these access barriers to be removed. Keep in mind that this does not mean they believe that people would not still have "impairments" that affect how they are able to function, but that it defines disability as the disadvantages caused by an ableist society treating impairments as needing to be "fixed" rather than accommodated. I defines being abled as being able to participate in society to the full extent an impaired individual wishes to.
I believe in a mixed social-medical model. I believe that some conditions are inherently disabling and that seeking medical treatment for them, while it should be up to disabled individuals, is helpful and good. My ADHD, for example, will still limit my participation in society to the extent I want to, without medication. You could consider medication an accommodation, but there's also the example of my chronic pain and fatigue and POTS that often keeps me housebound or bedbound. There may not be a treatment for that, and I cannot fully participate in the world around me because of that.
"Ultimately, the social model of disability proposes that a disability is only disabling when it prevents someone from doing what they want or need to do."
I am actively prevented from doing what I want or need to do by an inherent feature of my body that no amount of accommodation can allow for. However, some of my conditions would not be disabling with proper accommodation - my autism, for example, I don't generally consider disabling because the people and structures around me DO accommodate for it.
So why is demedicalization helpful or necessary, and how is is applied?
Well, three psychological examples: autism, psychosis, and schizophrenia.
Autism is currently, in the DSM, called autism spectrum disorder. However, autism is a neurotype, and many autistic people do not feel that autism inherently causes them distress or dysfunction, and is therefore not disordered. That is why many of us call ourselves autistic people or say we have autism, rather than ASD. There has been a push for years for the diagnosis itself to be changed to not contain the word "disorder", and to allow for informed self-diagnosis.
Informed self-diagnosis is also an important part of demedicalization, especially of neurodivergence. It says "someone doesn't need a doctorate to know themselves and their own experiences well enough to categorize and classify them. Good research and introspection is enough to trust a person to make the call, and labeling oneself as a specific kind of neurodivergence is harmless, even if they later find out they were wrong.
Psychosis is the next example. There is a growing movement that I've talked about before: the pro-delusion movement. Not everybody experiences distressing delusions, and even when they are distressing, this movement says that only the individual experiencing them has the right to decide whether they should be encouraged or discouraged. It states that it is a violation of autonomy to nonconsensually reality check (tell someone their delusions are not reality) someone, and that as long as a person is not harming others, they can do as they like with their delusions.
This is an example of demedicalization. Treating delusions as something not to be suppressed with medication or ignored or "treated" or "fixed", but as simply another, morally and "healthily neutral" way of existing outside homogenous neurotypical norms.
Finally plurality. Now what's key here is that demedicalization does not mean saying a thing can NEVER be disordered. In fact, that's why I made this post. I saw someone the other day say that they felt their aromantic identity was disordered. Initially, I balked, thinking they were internally arophobic, but I listened to what they had to say. Essentially, they expressed that the identity was never inherently disordered, but that it caused them distress and dysfunction and so they experienced it as such, and crucially, that wasn't a morally bad thing or something they felt they had to correct.
Because here's I think what gets left out of discussions on demedicalization: demedicalization also means no longer treating disorders as something that inherently have to be treated or fixed, that disorders can simply exist as they are if the person with a disorder so chooses; and that anything can be labeled a disorder if it causes distress and dysfunction without being inherently disordered AND without needing to be treated.
And conversely, this means that if you experience something as disordered, demedicalizing it means that you do not have to meet an arbitrary categorical set of requirements to seek treatment, but can do so based on self-reported symptoms. Treatment cannot be gatekept behind a diagnosis that only a "qualified professional" can assign you.
This means if someone wants to, they can label their autism as disordered, but it is never forced on anyone. If someone feels ANY identity - neurodivergent, disabled, queer, alterhuman, paraphilia, whatever - is disordered, they can label it as such, but they also don't have to. There are no requirements to follow through with "treating" anything you label a disorde, either. No strings attached, just the right to self-determination and the right to autonomy hand in hand,
So, back to plurality. You essentially end up with three aspects of demedicalization. You have nondisordered plurality being normalized, you have dissociative disorders that systems can choose not to pursue treatment for without judgment or coercion, and you have disordered systems that can pursue treatment for dissociative symptoms without receiving a difficult-to-access diagnosis. Based on their experiences, they can choose to label themselves as having DID, OSDD, UDD, or related disorders, or to forgo the label and simply seek treatment for whatever distress or dysfunction the disorder is causing.
"But without a specific diagnosis, what if they pursue the wrong treatment and it harms them?"
This is where the importance of recognizing self-reported symptoms as valid comes in. If an OSDD-1b system that hasn't labeled themselves or receives a diagnosis reports that they don't experience amnesia, they won't receive treatment for amnesia.
And since symptoms can mask, if a DID system reports not experiencing amnesia, they simply do not become aware of it or receive treatment for it before they are ready, which is a good thing because recognizing certain symptoms before you are ready to deal with them can be destabilizing and dangerous. More awareness of dissociative disorders will also make it easier for systems to adequately recognize those symptoms, and this isn't saying that someone else can't suggest it to the system experiencing it. It's simply saying the person experiencing a disorder takes the lead and is centered as the most important perspective.
I consider myself to have several disorders and several forms of nondisordered neurodivergence. My BPD is disordered but I am not treating it because I have healthy coping skills already. Same with my schizophrenia. My narcissism, on the other hand, is simply a neurotype. My plurality is both - the plurality itself isn't disordered, but I do have DID on top of it.
A last example, this one physical, of demedicalization: intersex variations. The intersex community has been pushing to recognize that intersex variations are natural variations in human sex, and not medical conditions that need corrected. This doesn't mean that any unpleasant symptoms related to an intersex variation can't ever be treated - in fact, it's important to the community to have that bodily autonomy to access whatever reproductive healthcare is needed - but it does mean treating our sexes as inherently normal and NOT trying to coercively "correct" them.
So in summary, demedicalization is fundamentally about autonomy. It is about considering natural human variations as such, rather than as sickness to be cured, about letting people determine for themselves whether any aspect of themselves is disordered, and the decision on whether or not to pursue treatment for anything being theirs alone. It is about trusting people to be reliable witnesses and narrators of their own subjective internal experiences, and about never forcing anyone to change any aspects of themselves, disordered or not, that aren't harming others. In short, it is about putting power back into the hands of disabled people. And that is what this blog is all about.
Listen. Endogenic systems (with or without DID/OSDD-1) and nondisordered traumagenic systems and supporters thereof, by a very large majority, are not calling for DID/OSDD-1 to be demedicalized. We want those to stay disorders so that people who actually do need the help and support and treatment and accommodations can get it.
We want plurality to be demedicalized. It already is, anyway - that's why there's nondisordered plural systems in the first place. We want more people to recognize that it's possible to be many in one head and not have DID or OSDD-1 or any other disorder - just like the ICD-11 says is possible. Like Dr. Eric Yarbrough's book Transgender Mental Health says in its chapter on plurality. Like what two of the authors of the theory of structural dissociation of the personality said. Just like we plurals have been saying for decades.
So please stop saying that we want DID/OSDD-1 to be demedicalized. We don't. That's a strawman.
- Plurality in and of itself isn’t medicalized to BE demedicalized
- You can only be “plural” if you have DID/OSDD
- You can only have DID/OSDD as a result of childhood trauma
What these endos are talking about is reevaluating the current DSM to expand it so that it includes and explores non-traumatic plurality-- which of course, isn’t a thing. By pushing this rhetoric, though, they are actively harming the DID/OSDD community-- and themselves.
The entire purpose of DID/OSDD is to protect the mind from trauma. Many people can’t/won’t/don’t remember their trauma, but continue to experience the residual effects of it through dissociation and PTSD. By pushing to explore non-traumatic plurality, a lot of people who were abused and traumatized as children will never find help to deal with their symptoms, never come to terms with their experiences and heal, and forms of treatments would move away from breaking down these dissociative barriers, likely catering instead to “alter management”-- which seems to be the selling point of “plurality” (not to say that alter management isn’t helpful, but it’s certainly not the only thing “traumagenics” are experiencing).
Being a “system” isn’t a fun game-- it’s not “natural and healthy”. It can BE healthy, so long as people with DID/OSDD continue to have access to therapy and resources to help them manage better, but you’re asking to take that away so you can have a spot in something you clearly don’t belong in.
Stop it.
“Healthy Multiplicity” and similar things might be terms that endos created, but it’s certainly not a space where they belong. If you’re a system, you have trauma, and you’re so far in denial that you’re the least healthy among the community, and you’re only hurting your own chances of getting real, meaningful help.
Being trans is a medical condition. Demedicalizing it will make trans suicide rates even higher due to people not being able to afford transitioning. Don't believe me? Testosterone/estrogen without insurance can cost $200/$300 per vial and a vial lasts about a month. That's $2,400/$3,600 per year for HRT alone! Top and bottom surgeries will cost an unimaginable amount without insurance. I've known it to cost people who's insurance won't cover around $9,000/$15,000 possibly even more! Trans people need to transition to treat dysphoria. Dysphoria left untreated increases suicide risks. So if you believe in demedicalization, stop it!
Healing Beyond Medication: Philip Battiade on Demedicalization and Patient Care
Welcome to the Lisa Haisha channel! In this video, Philip Battiade shares his approach to patient care through the Infusio Treatment Concept. So, Explore the video, and don't forget to subscribe to the channel.
Peter Conrad & Kristin K. Barker, The Social Construction of Illness: Key Insights and Policy Implications, 51 J Health & Soc Behav S67 (2010)
Abstract
The social construction of illness is a major research perspective in medical sociology.This article traces the roots of this perspective and presents three overarching constructionist findings. First, some illnesses are particularly embedded with cultural meaning—which is not directly derived from the nature of the condition—that shapes how society responds to those afflicted and influences the experience of that illness. Second, all illnesses are socially constructed at the experiential level, based on how individuals come to understand and live with their illness. Third, medical knowledge about illness and disease is not necessarily given by nature but is constructed and developed by claims-makers and interested parties. We address central policy implications of each of these findings and discuss fruitful directions for policy- relevant research in a social constructionist tradition. Social constructionism provides an important counterpoint to medicine’s largely deterministic approaches to disease and illness, and it can help us broaden policy deliberations and decisions.
In the last 50 years, the social construction of illness has become a major research area in the subfield of medical sociology, and it has made significant contributions to our understanding of the social dimensions of illness. In this article we briefly trace the roots of a social constructionist approach to illness, and we present some of the key findings of social constructionism organized under three themes: the cultural meaning of illness, the illness experience as socially constructed, and medical knowledge as socially constructed. In addition, we address central policy implications of these findings and fruitful directions for policy-relevant research in a social constructionist tradition.
Social constructionism is a conceptual frame- work that emphasizes the cultural and historical aspects of phenomena widely thought to be exclusively natural. The emphasis is on how meanings of phenomena do not necessarily inhere in the phenomena themselves but develop through interaction in a social context. Put another way, social constructionism examines how individuals and groups contribute to producing perceived social reality and knowledge (Berger and Luckman 1966). A social constructionist approach to illness is rooted in the widely recognized conceptual distinction between disease (the biological condition) and illness (the social meaning of the condition) (Eisenberg 1977). Although there are criticisms and limitations of this distinction (Timmermans and Haas 2008),1 it is nevertheless an exceedingly useful conceptual tool. In contrast to the medical model, which assumes that diseases are universal and invariant to time or place, social constructionists emphasize how the meaning and experience of illness is shaped by cultural and social systems. In short, illness is not simply present in nature, waiting to be discovered by scientists or physicians. As Gusfield (1967) notes, “Illness is a social designation, by no means given in the nature of medical fact” (p. 180). There are, of course, biophysiological bodily conditions or naturally occurring events, but these aren’t ipso facto illnesses. Neither are they ipso facto diseases. The disease side of the disease/illness conceptual distinction is also ripe for social constructionist analysis, insofar as what gets labeled a disease or qualifies as biological is often socially negotiated.
The Origins of Social Constructionism
There are multiple intellectual roots of a social constructionist approach to illness.
Some of the basic building blocks are evident in the writings of early sociological thinkers (e.g., Emile Durkheim, Karl Mannheim, and W. I. Thomas), but we will start the story in the 1960s with the more direct predecessors of, and early contributors to, the social construction of illness.
One of the most important intellectual foundations of the social construction of illness is social problems theory and research from the 1960s and 1970s. Distancing themselves from positivist interpretations, scholars in this tradition asserted that what comes to be identified as deviant behavior or a social problem is not “given,” but rather is conferred within a particular social context and in response to successful “claims-making” and “moral entrepreneurialism” by social groups (Becker 1963; Gusfield 1967, 1975; Spector and Kitsuse 1977). These scholars also emphasized the intentional use of these categories for the purpose of social control (i.e., defining and enforcing how particular people ought to behave). The basic tenets of this framework have been readily applied to illness. Specifically, medical sociologists point to the contingent processes by which certain behaviors and experiences come to be defined as medical conditions, and the way those definitions can function as a type of social control (Conrad and Schneider 1992; Zola 1972).
Symbolic interactionism and phenomenology— two popular and overlapping intellectual trends in sociology in the 1960s—also significantly contributed to a social constructionist approach to illness. Erving Goffman’s (1961, 1963) early work helped to shape the symbolic interactionist tradition. Through his conceptualization of the “moral career,” Goffman spoke to the social experiences of patienthood, as distinct from any biological condition that may (or may not) launch such a career. According to Goffman and other symbolic interactionists, individuals actively participate in the construction of their own social worlds, including the construction of selfhood, via ongoing social interaction (Blumer 1969). The key tenets of symbolic interactionism effectively lent themselves to a detailed exploration of illness as experienced within the context of daily social interactions, which in turn alter the performance of self (Charmaz 1991; Glaser and Strauss 1965). In a related fashion, phenomenological tenets (Berger and Luckmann 1966; Schutz 1967) were appropriated by medical sociologists to showcase how individuals make sense of their illness, how they cope with physical and social restrictions, and how they deflect self-erosion in the face of those restrictions (Bury 1982).
Eliot Freidson’s (1970) paradigm-shifting book, Profession of Medicine, also laid important groundwork for the social construction of illness approach. In the latter part of the book, in a section titled “The Social Construction of Illness,” Freidson (1970) explains how illnesses have consequences independent from any biological effects:
[W]hen a physician diagnoses a human’s condition as illness, he [sic] changes the man’s [sic] behavior by diagnosis; a social state is added to a biophysiological state by assigning the meaning of illness to disease. It is in this sense that the physicians creates illness . . . and that illness is . . . analytically and empirically distinct from mere disease. (p. 223)
Not only did Freidson (1970) explicitly recognize the real and tangible social consequences of an illness label, but he also urged sociologists to address “how signs or symptoms get to be labeled or diagnosed as an illness in the first place” (p. 212). By arguing that illness and disease, like deviance, are social constructions (i.e., they are evaluative categories based on social ideas about what is not “acceptable” or “desirable”), Freidson foreshadowed the subsequent sociological study of medical categories and knowledge.
The writings of Michel Foucault (1977) and work in the Foucauldian tradition, albeit in a different vein, also emphasized the scrutiny of medical knowledge, and, in so doing, contributed significantly to a social construction of illness approach. Foucault regarded knowledge as a form of power. Specifically, he argued that expert knowledge about human “normality” and “abnormality,” which is not objective or naturally given, is the principal form of power in modern societies: hence, his oft quoted expression, “knowledge/ power.” Foucault stressed how medical discourse constructs knowledge about the body, including disease. As Bryan Turner (1995) notes, “We can no longer regard diseases as natural events in the world which occur outside the language in which they are described. A disease entity is the product of medical discourses” (p. 11). In turn, medical discourse can influence people’s behaviors, impact their subjective experiences of embodiment, shape their identities, and legitimate medical interventions (Foucault 1975, 1977). Accordingly, Foucault-inspired scholars deconstruct medical knowledge (i.e., provide a detailed analysis of medical discourse) to reveal its embedded meanings, normalizing tendencies, and relationship to embodiment and identity (Barker 1998; Lupton 1997; Rose 2006).
This is by no means an exhaustive account of the intellectual strands that lead up to, and continue to inform, a social constructionist approach to illness. Moreover, these strands are not mutually exclusive. Many medical sociologists draw on various aspects of these different traditions. As we proceed, we consider the social construction of illness approach as something of an amalgam. Although this minimizes important differences between various types of social constructionism, it can be justified in that they all share an eschewal of a strictly positivist conception of illness as the mere embodiment of disease. The approach foregrounds how illness is shaped by social interactions, shared cultural traditions, shifting frameworks of knowledge, and relations of power.
Key Findings of Social Constructionism
Cultural Meanings of Illness
Illnesses have both biomedical and experiential dimensions. Although often unnoticed or taken for granted, certain illnesses have particular social or cultural meanings attributed to them. These meanings adhere to the illness and may have independent consequences on patients and health care. Cultural analysts point out that illnesses also may have metaphorical connotations. Susan Sontag (1978), for example, argued that negative metaphorical meanings of cancer, as evil or repressive, are common in our society and significantly impact those afflicted with the disease. Similarly, Barry et al. (2009) examined how obesity metaphors, such as “obesity as sinful” (gluttony), affect individuals’ support for different public policies aimed at reducing obesity.
While sociologists have rarely focused on the metaphorical connotations of illness, they have examined the impact of other cultural meanings embedded in illness. In this regard, all illnesses are not the same. For instance, some illnesses are stigmatized, and others are not; some are contested, and others are not; and some are considered disabilities, while others are not. What is important about these distinctions is that they exist for social rather than purely biological reasons. As we will see, sociologists are keenly interested in examining these distinctions because they bring into sharp relief the cultural landscape that ordinarily eludes us; or, as the anthropologist Ralph Linton (1936) once quipped, “The last thing fish would notice is water.” But more than mere sociological curiosities, these cultural meanings have an impact on the way the illness is experienced, how the illness is depicted, the social response to the illness, and what policies are created concerning the illness.
Here, one key line of sociological research is that which considers the cultural meaning of stigmatized illnesses. Drawing on the work of Goffman, Gussow and Tracy (1968) were the first to distinguish “stigmatized illness” as a category using the case of leprosy. Subsequent researchers examined the construction and impact of a number of stigmatized illnesses, including mental illness, epilepsy, cancer, HIV/AIDS, and sexually transmitted diseases (STDs). These researchers have identified how some illnesses become stigmatized, the impacts of stigma, the ways individuals and collectivities manage stigma, and how illness stigma can change over time. For example, research has shown, in the case of epilepsy, that it can be more difficult for sufferers to manage the stigma than the seizures (Schneider and Conrad 1983; Scambler 1989). In the case of HIV/AIDS, other research has shown how stigma limits access to treatment and affects relationships and identity (Epstein 1996; Weitz 1990). The lesson from a constructionist stand- point is that there is nothing inherent about a condition that makes it stigmatizing; rather, it is the social response to the condition and some of its manifestations, or the type of individuals who suffer from it, that make a condition stigmatized (Conrad 1987).
Contested illnesses are a category of disorders that, by definition, have a very particular cultural meaning. These are illnesses where sufferers claim to have a specific disease that many physicians do not recognize or acknowledge as distinctly medical. Contested illnesses, including chronic fatigue syndrome, fibromyalgia syndrome, irritable bowel syndrome, and multiple chemical sensitivity are medically suspect because they are not associated with any known physical abnormality. These illnesses showcase the tension between lay and medical knowledge with respect to the cultural legitimation of symptoms and suffering. In the words of one researcher, these are “illness[es] you have to fight to get” (Dumit 2006). Physicians, the public, and sometimes even sufferers themselves question the authenticity of the symptoms and the mental stability of the sufferer. In sum, contested illness sufferers are burdened by the cultural mean- ing of a medically invisible condition in an era of high-tech biomedicine (Barker 2005; Brown 2007; Kroll-Smith and Floyd 1997). In fact, this becomes one of the most important characteristics of these illnesses, affecting access to a diagnosis and health care, the response of others to one’s problem, and the very identity of the sufferer.
Research describing the social construction of disability also provides a powerful example of the cultural meaning of certain conditions. The roots of this approach are found in Goffman’s (1963) Stigma, wherein he highlights the social meaning physical impairment comes to acquire via social interactions. Specifically, Goffman claims that the social meaning of impairment does not emanate from the impairment itself, but from the fabric of everyday life. The social model of disability, grounded on social constructionist tenets, conceptually distinguishes impairment (i.e., the attribute) from disability (i.e., the social experience and meaning of impairment). Because the attributes that are deemed disabilities, and the very meaning of being disabled, vary across time and space, disability cannot be reduced to a mere biological problem located in an individual’s body (Barnes, Mercer, and Shakespeare 1999). In its most basic form, this distinction suggests that the body has an impairment (e.g., loss of limb) while society creates the disability (Oliver 1996). Rather than a “personal tragedy” that should be fixed to conform to medically determined standards of “normality” (Zola 1982), disability becomes politicized. New questions then emerge. What obstacles limit the opportunities for individuals with impairments? How can those obstacles be altered or removed?
Policy Implications of the Cultural Meaning of Illness
As we have noted, certain illnesses come to have cultural meanings that are not reducible to biology, and these cultural meanings further burden the afflicted. At a general level, insights from this line of research suggest a shift in emphasis away from an exclusive focus on biomedically fixing individuals and toward changing the social and cultural context that gives particular illnesses their negative meaning.
For example, there are policy implications of both stigmatized illness and contested illness. Stigmatized illness can make an illness much more difficult to treat and manage. For example, if an illness such as epilepsy or HIV/AIDS has a powerful stigma, it can make people less likely to seek treatment for fear of being mistreated by health care providers and publicly associated with a tainted condition. Obese women report avoiding routine gynecological exams, despite having higher rates of gynecological cancers than non-obese women, because of the stigma of obesity and the corresponding negative attitudes of health care professionals toward overweight people (Amy, Aalborg, Lyons, and Keranen 2006). Therefore, an effective policy based on early cancer screening must overcome this barrier.
In the case of contested illnesses, the fact that sufferers’ symptoms are not readily associated with a discernable biomedical abnormality often makes it difficult for them to have their symptoms acknowledged or treated, and often raises suspicions that their problems are “all in their heads.” Some physicians refuse to treat patients diagnosed with contested illnesses, and some insurance companies will not reimburse for such treatment. On the other hand, patients’ desires for a medical diagnosis as confirmation that their symptoms are “real” often lead to excessive demand for unnecessary and costly diagnostic procedures. Faced with this situation, health organizations may find that giving patients a contested illness diagnosis and providing them with inexpensive palliatives is the most effective means of cost containment. Consequently, there are real concerns that these diagnoses are being overused to manage difficult and potentially expensive patients (Barker 2005). This may be one factor behind the growing prevalence of contested illnesses. Another may be the rise and spread of Internet support groups as alternative arenas for legitimating such illnesses. Despite the widespread use of these diagnoses, sufferers of contested illnesses only infrequently receive disability benefits, even when they meet the stated criteria regarding the inability to do “usual and customary work.” Funds for medical research to find solutions for the putative problems that underlie contested illnesses are also scarce relative to the number of individuals afflicted. In each of these areas, effective medical practice and policy are likely to be enhanced by a greater appreciation of the behavioral consequences of cultural meanings that grant legitimacy to the symptoms of some sufferers and not to those of others.
The policy insights derived from the social construction of disability approach are myriad. Passed in 1990, the Americans with Disabilities Act (ADA) affirms the essence of social constructionist claims—namely, an individual’s impairment need not be disabling when society makes reasonable accommodations, such as ramps to allow wheelchair access into buildings. Although a symbolic civil rights victory for individuals living with disabilities, the legal limitations of the ADA are well known (Acemoglu and Angrist 2001; Lee 2001). Moreover, the ADA primarily addresses workplace discrimination and issues of public access, which, although important, do not represent a fundamental shift in the cultural meaning of disability. The social constructionist perspective helps make sense of many other policy debates, including the opposition of many members of the deaf community to cochlear implants. For example, while parents of deaf children hope the implant will make their children as normal as possible by giving them at least some ability to hear, the deaf community contends that deafness is not a medical defect but a cultural identity with its own language and that implants undermine that identity (Dolnick 1993). Social constructionist tenets also help explain why some disability rights advocates part ways with other progressives on policies concerning death with dignity and prenatal genetic screening and selection. The disability rights movement often opposes the cultural messages behind these policies and procedures—namely, that it’s better to be dead (or not born at all) than disabled.
Illness Experience as Socially Constructed
Another key insight of constructionism is that the illness experience is socially constructed. This assertion is grounded in the strong pragmatist underpinnings of symbolic interactionism and phenomenology, which suggest that reality does not just exist out there in the world waiting to be discovered, but rather is created by individuals who act in and toward their world. Applied to illness, people enact their illness and endow it with meaning. They are not merely passive entities to whom things are done (be it by a disease or by doctors and treatments). This is the general starting point for a number of important lines of sociological research, all highlighting the everyday and subjective experience of illness.
In the 1960s, sociologists began to study the patient’s perspective of illness (e.g., Glaser and Strauss 1965; Goffman 1961). Strauss and his colleagues (Strauss and Glaser 1975), however, were among the first to recognize that the patient experience is not the same as the illness experience; after all, people with illnesses spend very little time in the patient role. This important step laid a foundation for a more developed approach to the experience of illness. Building on this tradition, Conrad (1987) elaborated the approach:
[A] sociology of illness experience must consider people’s everyday lives living with and in spite of illness. It needs to be based on systematically collected and analyzed data from a sufficient number and variety of people with an illness. Such a perspective necessarily focuses on the meaning of illness, the social organization of the sufferer’s world, and strategies used in adaptation. (pp. 4–5)
This research is usually based on in-depth inter- views, focusing on the subjective illness experience and creating an “insider’s” view. Such a perspective is well positioned to examine how individuals construct and manage their illness, and with what consequences. The research of Charmaz (1991) is a well-developed example. Charmaz describes how the worlds of some individuals shrink when they are immersed in the day-to-day aspects of managing a chronic illness. They become increasingly cut off from the routines of conventional life—unable to work, spend time with family, socialize with friends, or move about freely. Thus, the foundation on which a sense of self is based can be lost, there is nothing to look forward to, and nothing to do; time is experienced as unchanging (Charmaz 1991).
There are also a number of studies that closely examine the experience of specific illnesses such as HIV/AIDS (Klitzman and Beyer 2003; Weitz 1990), diabetes (Peyrot, McMurry, and Hedges 1987), asthma (Snadden and Brown 1992), and fibromyalgia (Barker 2005). Schneider and Conrad (1983), for example, provide a detailed account of the experiences of individuals with epilepsy, including the ins and outs of when, and to whom, they reveal or conceal information about their illness. From getting a driver’s license and negotiating intimate relationships, to going on a job interview or being on the lookout for “safe places” to have seizures, individuals with epilepsy try to maintain self-control, skirt embarrassment and discrimination, and avoid becoming the object of a public crisis. Whether focusing on chronic illness in general, or on a specific chronic illness, these are the types of rich details that emerge from research into the illness experience.
This research also describes how people struggle to make sense of their illness and reclaim a sense of self. People endeavor to endow their ill- ness with meaning within the context of their personal and social relationships, employment status, health insurance coverage, religious and cultural beliefs, and the like. Individuals may abate an erosion of self by engaging in identity reconstruction. Said differently, when illness becomes a “biographical disruption,” individuals recast themselves in terms of new and unexpected plot developments (Bury 1982). Chronic illness can prompt a re-evaluation of one’s former life and identity, and, in some cases, the creation of a new illness identity (e.g., cancer survivor). Finally, medical sociologists have documented how laypeople sometimes create and join illness-based social movements, generate lay knowledge about their own medical conditions, and forge new communities based on illness identities (Banks and Prior 2001; Brown et al. 2004; Kroll-Smith and Floyd 1997). Millions of American women, for example, identify as breast cancer survivors and activists in the fight against breast cancer. They exchange information about their treatment options, participate in national fundraising events, and mobilize in support of relevant policies and initiatives (Klawiter 2008; Radin 2006). In sum, individuals actively shape the parameters of their illness and the meaning of selfhood in relationship to those parameters.
This line of research brings to the fore aspects of illness that the tools of medicine are unable to reveal. A constructionist approach takes the subjective experience of illness seriously, examining the personal and social meanings of illness, and exploring how illness is managed in the social contexts that sufferers inhabit. This research has given us a detailed and intimate view of the suffer- ing that illness often represents, but it has also shown us that agency and resistance are key to the illness experience. Even in illness individuals are not passive: “the self is more than its body and much more than an illness” (Charmaz 1991:258).
Policy Implications of Illness Experience as Socially Constructed
The key research findings concerning the social construction of the illness experience have a number of critical policy implications. First, some of these findings shed a new light on clinical perspectives and policies toward issues such as “noncompliance” (Conrad 1985; Peyrot et al. 1987) and the impact of the subjective perspective on interactions with medical professionals and care-givers (Waitzkin 1991). The focus on the meanings of medications in the context of a patient’s everyday life, rather than on compliance with doctors’ orders, allows the clinical policy focus to shift from “compliance” to context-centered strategies to improve the effective implementation of medical regimens. By giving voice to the sufferers’ perspective, the experience of illness approach can lead to important clinical reforms. Take the case of pain management. Despite its vast technical arsenal, medicine is simply unable to see or measure pain. For this reason, physicians have often trivialized the pain of patients who lack a visible injury to account for their suffering. More aggressive pain management may be mandated, however, once we take seriously and develop appropriate means of evaluating the vivid accounts of chronic pain sufferers. The current interest in narrative medicine is in large part predicated on the work of sociologists and others who were among the first to listen to illness stories (Frank 1995). As a window into subjective experience, illness narratives are now used as a means of bringing the person back into medicine, both as an end in itself and for potential therapeutic benefits. Again, chronic pain is illustrative: When it comes to affirming the humanity of the sufferer and authenticating the existence of pain, patient narratives are a tool for overcoming the limitations of high-tech medicine (Kleinman 1988).
There are also policy and clinical implications associated with the constructionist findings regarding lay knowledge and illness identities. With the expansion of the Internet, laypeople are becoming more actively involved in producing and consuming knowledge about their own health conditions; they are also increasingly likely to create and embrace new illness identities. Some medical sociologists suggest that lay ways of knowing may supplement medical knowledge and positively influence health outcomes (Brown 1992; Kroll-Smith and Floyd 1997). Illness identities might also contribute to improved well-being insofar as they represent a form of self-empowerment (Popay and Williams 1996). However, there are also reasons to be concerned that lay knowledge and illness identities may negatively impact doctor–patient relationships and health outcomes and contribute to the expansion of medicalization (Fox, Ward, and O’Rourke 2005; Hardey 1999). For better or worse, lay and experiential knowledge will increasingly come into conflict with and challenge professional knowledge. This is all the more assured given orthodox medicine’s mixed record of therapeutic efficacy in the face of many chronic illnesses. Coming to terms with these lay-medical conflicts and the movements they engender will create major policy challenges.
Medical Knowledge as Socially Constructed
Eliot Freidson (1970) was probably the first medical sociologist to articulate how medical knowledge is socially constructed. Over the years, social scientists have taken several different paths in the study of the social construction of medical knowledge.
One major line of research exposes how medical knowledge sometimes reflects and reproduces existing forms of social inequality. Rather than being value-neutral, some medical knowledge, implicitly or explicitly, shores up the interests of those groups in power. Upon close inspection, some medical ideas have been shown to support gender, class, and racial-ethnic inequality. For the sake of illustration, we present some important feminist contributions to this undertaking.
Feminists have found the social construction of illness approach to be a particularly potent analytic device. This affinity is likely the result of the strong constructionist tendency within feminist theory more generally. The starting point for most (but not all) feminist theory is the conceptual distinction between gender and sex. Feminists claim that gender is a social construction, by which they mean that our ideas about gender (i.e., norms and standards concerning femininity and masculinity) are not predetermined by our biological sex differences. Therefore, our ideas about gender and the social practices that they institutionalize are alterable.
A number of feminist scholars have shown how gender meaning is inscribed onto women’s bodies and minds through past and present medical discourse and practice, and, in turn, functions to naturalize gender inequality (Clarke 1998; Ehrenreich and English 1978; Lorber 1997). For example, embedded within medical knowledge about pregnancy, premenstrual syndrome (PMS), childbirth, and menopause, one finds clear ideas about women’s “proper” (i.e., subordinate) place in society, as well as moral assumptions about women’s sexuality and femininity more generally. In the early twentieth century, pregnant women were advised against driving an automobile or dancing, on grounds that these activities threatened the health of their unborn child. Today, pregnant women are endlessly warned about the risks of drinking alcohol (Armstrong 2003). In both periods, the medical advice reflects marked cultural anxieties about women’s sexual and social freedoms; and, in both periods, when pregnant women follow the prescribed medical advice, they enact the dominant cultural ideals of femininity. Medical knowledge about PMS provides another interesting case. Precisely because some of the symptoms of PMS (e.g., frustration, aggression, anger) defy norms about how women ought to behave, they become prima facie evidence of a disorder (Markens 1996). Thus, not only can medical ideas result in the social control of women’s behavior, but they also contribute to our cultural beliefs concerning the existence of unalterable differences between men and women. These beliefs, in turn, can be used to justify gender inequality within intimate relationships, families, institutions, and society.
The research of medical sociologists in the subfield of science studies also reveals how medical knowledge is conditioned by the social context in which it is developed. Specifically, these scholars explain that what qualifies as biological disease or biomedical evidence is often socially negotiated and interpreted (Joyce 2008; Timmermans 2007). Steven Epstein’s work is exemplary of this type of research. In a recent book Epstein (2007) analyzes the emergence, beginning in the mid-1980s, of a new paradigm of biomedical research that proactively included individuals from underrepresented social groups (e.g., women and racial and ethnic minorities) in clinical studies, with an eye toward understanding the differences between groups with respect to disease processes and treatment outcomes. Even as this new paradigm offers potential tools for addressing nagging questions about health disparities—e.g., why do black women with breast cancer have higher mortality rates than their white counterparts?—it has the consequence of reifying the categories of race and gender as biological realities. But, by showcasing how a number of different interest groups and institutional players (e.g., feminist activists, advocates for racial and minority groups, and various cadres of bureaucrats) pushed for this new research paradigm, Epstein explains how the knowledge it produces about race and gender are in part the outcome of social and political conflicts and negotiations, as opposed to essential truths found in nature. In an earlier book, Epstein (1996) similarly underscored the politics of knowledge by demonstrating how the science regarding the cause and treatment of HIV/AIDS is best understood as an amalgam that was constructed and contested by different constituencies (e.g., scientists, doctors, drug companies, patients, and activists) rather than the outcome of “pure” science.
Also under the general theme of the social construction of medical knowledge is the influential work on medicalization. Medicalization occurs when human problems or experiences become defined as medical problems, usually in terms of illnesses, diseases, or syndromes. In general, sociologists who study medicalization emphasize the processes by which a particular diagnosis is developed, becomes accepted as medically valid, and gets used to define and treat patients’ problems. Sociologists have described many different types of problems and experiences that have come to be defined and treated medically. Early studies focused on the medicalization of deviance, including madness, drug and alcohol problems, and homosexual behavior (Conrad and Schneider 1992). Over the years, sociologists have shown that women’s natural reproductive functions (e.g., pregnancy, childbirth, menstruation) are routinely medicalized (Barker 1998; Riessman 1983; Riska 2003). For example, Prempro, a widely prescribed hormone replacement drug, is just the latest in the ongoing effort to medically “treat” menopausal “symptoms,” despite the fact that changes associated with menopause are a common and ordinary aspect of women’s reproductive lives.
In recent years sociologists have focused on the medicalization of ordinary life events, risk, and “proto illnesses,” as well as individuals’ perceived shortcomings and their desire for enhancements, e.g., improved sexual performance (Conrad 2007). Likewise, the engines of medicalization have expanded beyond medical professionals, social movements, and organizations to biotechnology, consumers, and the insurance industry. There is increasing evidence that commercial aspects of medicine, especially the pharmaceutical industry, are increasingly important in the shaping and disseminating of medical knowledge to promote their products. There are now important case studies on female sexual dysfunction (Hartley 2006), menopause (Bell 1990), mild depression (Horwitz and Wakefield 2007), sleep disorders (Williams 2005), and many other problems. The case of erectile dysfunction is telling (Loe 2004). In the late 1990s male impotence was renamed “erectile dysfunction” (ED), and in 1998 the FDA approved Viagra for its treatment. The drug was intended for older men with chronic erectile problems and for ED associated with prostate cancer, diabetes, and other medical conditions. Pfizer, the drug manufacturer, soon began promoting the drug to a much larger audience. Using television commercials featuring virile and relatively young professional athletes, Pfizer presented Viagra as benefiting any man, regardless of age. When newer competitor drugs such as Cialis and Levitra came on the scene they were widely advertised as not only treating ED, but as useful for anyone who worried about or wanted to enhance their (or their partner’s) sexual experience (e.g., “Cialis is ready when you are”). Both the boundaries of the ED diagnosis and the markets for ED drugs expanded enormously (Conrad 2007).
Policy Implications of Medical Knowledge as Socially Constructed
A number of policy implications are derived from the key findings concerning the social construction of medical knowledge. By acknowledging that medical knowledge about disease and illness is constructed by socially situated claims-makers and other interested parties, we can bring greater critical awareness to the policy-making process. After all, any policy response to a problem is determined by how the problem is defined or framed in the first place. For example, how do we approach the problem of health disparities between racial and ethnic groups? When the solution is to mandate that federally funded clinical studies include individuals from underrepresented subgroups, we inadvertently cast the problem as rooted in biological differences between racial and ethnic groups and downplay the role of socially structured inequalities (Epstein 2007).
Likewise, when we define alcoholism as a disease, the dominant approach is to treat the individual alcoholic, rather than examine the social factors contributing to alcohol abuse or the role of the alcohol industry in alcohol promotion. When medical perspectives increasingly define obesity as an illness (rather than a risk factor for diseases such as diabetes, cardiovascular disease, etc.), policies focus on solutions such as gastric bypass surgeries, rather than examining the role of product promotion by the food industry or the availability of healthy foods in neighborhoods with high rates of obesity.2 Warnings about the risks of fetal alcohol syndrome effectively blame individual women and deflect attention away from the well-established links among class, race, and birth outcomes (Armstrong 2003). Framing anger in women as evidence of the disease PMS, to be treated with antidepressants, trivializes the impact of gender inequality on women’s daily lives. And when difficulties in children’s attention and behavior get defined as attention deficit hyperactivity disorder (ADHD), school policies increasingly encourage the use of medication and special accommodations for learning disabled students; yet these responses fail to address the social and nonmedical causes of children’s classroom inattention or agitation, such as increasing class size or the termination of physical education programs (Conrad 1975).
In each case, and many others, the process by which human problems become medicalized in the first place is largely ignored in creating policy toward these issues. A social constructionist approach pro- vides a means of understanding how such problems come to be defined in medical terms and how this translates into public policy (see Gusfield 1981). As the above examples attest, medicalized constructions can also be strongly evaluative (i.e., they suggest how people ought to behave) and result in policies that authorize social control.
For sociologists, one of the most troubling results of medicalization is that it encourages medical solutions while ignoring or downplaying the social context of complicated problems (Lantz, Uchtenstein, and Pollack 2007). It seems that we have a social predilection toward treating human problems as individual or clinical—whether it be obesity, substance abuse, learning difficulties, aging, or alcoholism—rather than addressing the underlying causes for complex social problems and human suffering. We are quick to see individualized medical interventions as logically consistent responses to our troubles (see Conrad and Schneider 1992). However, medicalization research forces us to recognize both the origin and limitation of clinical and medical accounts. In so doing, we can be more skeptical of quick, medicalized fixes for what are really complex, multifaceted social problems.
Finally, medicalization itself raises concerns about the possibility of meaningful health care reform. Creating an ever larger jurisdiction of medical problems that are subject to potential insurance or public reimbursement may be a serious impediment to providing comprehensive and universal health care coverage. What is comprehensive coverage in the context of the successful commercialization of “elective” medicine, as in the case of cosmetic surgery or anti-aging medicine? Is it possible to provide universal coverage given our cultural predisposition for “a pill for every ill,” amplified by the pharmaceutical industry’s promotion of an “ill for every pill” (Mintzes 2002:909)? Are there are any limits to what can be medicalized, or are all human problems and variations in socially desirable characteristics fodder for medical diagnoses and treatments? In sum, the fiscal costs of run-away medicalization may significantly impede any effort to reform health care (Conrad, Mackie, and Mehrotra, 2010).
Directions for the Future
We identify several important directions for future social constructionist research in medical sociology. One intriguing direction for future research is to build on recent studies that examine the impact of the Internet on the illness experience (Barker 2008; Conrad and Stults 2010; Pitts 2004). For decades sociologists have shown illness to be a privatizing experience, and that, in comparison to other forms of social deviance, there were almost no illness subcultures. The Internet—with interactive Web sites, bulletin boards, and social network sites such as Facebook—is changing that. With thousands of Web sites and user groups dedicated to just about any illness imaginable, illness is becoming an increasingly public experience. This is leading not only to the creation of illness subcultures, but also to illness-based social movements, lay demands for medicalization or demedicalization (Conrad and Stults 2010), new avenues for sharing information and experiences, and the expanding influence of lay knowledge about illness. Thirty years ago few sufferers of an illness or disorder knew others with the same ailment; with the Internet this is becoming increasingly unlikely, and the consequences of this are grist for the sociological mill. Sociologists are well positioned to examine how Internet forums affect participants’ construction of illness identities and the impact on their illness experience. Beyond just the role of the Internet, future social constructionist researchers will need to track the rising influence of laypeople and lay knowledge about illness, the institution of medicine, and the nature of health care. As laypeople become more involved in collective illness behavior, including generating lay knowledge, and ever-more active consumers of medical care, what will be the impact on the mean- ing of illness, the delivery of services, and the role and influence of the medical profession? Laypeople can use the Internet to create and gather new medical knowledge and, with or without the Inter- net, organize to promote their own claims about sources and treatments of illness (Brown 2007). Compared to 50 years ago, physicians have experienced a relative decline in professional authority. Both reflecting and reinforcing this trend, laypeople with illness have a greater voice, and there is also greater recognition of that voice. The policy implications related to this shift are an important area of future research.
Medicalization studies will continue to be an important area of research in the social constructionist tradition. As the United States moves toward health care reform and the potential of universal (or at least expanded) health insurance, how will medicalization impact what is covered, and how will what is covered impact medicalization? How will the rise of commercialized medicine and biomedical enhancements (e.g., genetics and drugs) impact our medical costs, and what role will the forces toward medicalization play in this area? For example, will health insurance cover infertility treatments, genetic interventions for “addictions,” gastric bypass surgeries, and biomedical enhancements such as human growth hormone for short stature or so-called smart drugs (stimulant medications) for students and intellectual workers? Of course, unbridled medicalization is just one more reason health care reform is so difficult to achieve, but health care reform may, in fact, be one of the few countervailing forces to what otherwise seems to be an ever-increasing trend toward medicalization. Perhaps the problem of medicalization can help us as a society to realize that our resources are limited, even if the promises made by the commercial biomedical industry are seemingly boundless. In other words, the processes of medicalization are of considerable importance in the health care debate, and sociologists are in a good position to study those processes and inform the debate.
Conclusions
In this article we have touched on several different ways medical sociologists have utilized a social constructionist approach for studying illness over the last 50 years. We have highlighted the key findings of three lines of research and pointed to some policy implications of each. First, some illnesses are particularly embedded with cultural meaning—which is not directly derived from the nature of the condition—that shapes how society responds to those afflicted and influences the experience of that illness. Second, all illnesses are socially constructed at the experiential level based on how individuals come to understand their ill- ness, forge their identity, and live with and in spite of their illness. Third, as feminist, science studies, and medicalization analysts have demonstrated, medical knowledge about disease is not necessarily objectively given in nature; rather, it is constructed and developed by claims-makers and interested parties who frequently have a strong evaluative agenda. These findings do not invalidate scientific and medical perspectives, but rather demonstrate that diseases and illnesses are as much social products as medical-scientific ones.
These findings, although sociologically significant in their own right, have a number of policy implications. Some of these have already been adopted, but others have yet to find their way into the policy arena. By revealing the social contingencies of illness at the individual, institutional, and societal levels, a social constructionist approach provides an invaluable conceptual wedge for policy formulation. It brings our attention to contingent spaces where some form of action (or inaction) can fundamentally alter subsequent events. A constructionist approach reminds us that how a problem is defined affects how (or even if) society responds to the problem, and how the experiences of individuals are influenced by the definition and response to their problem. As such, social constructionism provides a counter to medicine’s deterministic logic in ways that can broaden and enrich policy deliberations and decisions. To that end, we must routinely ask ourselves, “What is the definition of the problem upon which this policy is based, how was it developed, and what are the consequences of adopting this definition?” Without these theoretically important questions to guide us in decision-making, we will likely make serious errors in the implementation of future health reforms and health-related policy initiatives.
Notes
Our task in this article is to highlight the most significant findings and policy implications of social constructionism. As such, we do not showcase the criticisms of social constructionism. We do, however, acknowledge that there are important critiques. Among the principal charges: social constructionism explicitly or implicitly denies the existence of the natural world, and it trips over or ignores questions concerning whether some ideas are better representations of the world than others. Ian Hacking (1999) also alleges that social constructionism inevitably reproduces a false binary between things that are real (and therefore have an entirely biophysical basis) and things that are socially constructed (and therefore have no biophysical basis whatsoever). As a result, Hacking contends, social constructionism fails to con- sider the possibility that something can be both real and socially constructed. However, sociologists have often supported this both/and view. For example, they suggest that the social forces constructing the definition and treatment of illness are themselves real phenomena that can be studied empirically (Brown 1995; Freidson 1970). Moreover, what is judged to be biological often rests on social dynamics and processes (Joyce 2008; Timmermans 2007). Following Freidson (1970), we do not think it is sociology’s job to adjudicate between what is “really” a disease or ill- ness and what is “socially constructed.” Indeed, like Hacking we consider this to be a false binary. From a social constructionist perspective, the point is to investigate how something comes to be defined as a “disease” or “illness” in the first place. Sociologists can further study the extant and changing cultural meanings that may inhere in a disease or illness while remaining agnostic about the “underlying” biological condition. In any given case, it is the viability of the idea of disease or illness itself (rather than its validity, per se) that is of greatest interest to sociologists.
Even the latter, more sociological approach misses the mark if being overweight merely represents part of the normal variation among humans, and, by itself, doesn’t produce poor health.
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Sanda H. Sulzer, Does “difficult patient” status contribute to functional demedicalization? The case of borderline personality disorder, 142 Soc Sci Med 82 (2015)
Abstract
A diagnosis of Borderline Personality Disorder (BPD) often signals the quintessential “difficult patient” status to clinicians, with at least one scholar arguing the condition itself was created to name and group difficult patients. While patients who are deemed difficult are often dispreferred for care, does this have an impact on their overall status as medicalized patients who have successfully achieved a sick role? This study relies on (n=22) in-depth interviews with mental health clinicians in the United States from 2012 to evaluate how they describe patients with BPD, how the diagnosis of BPD affects the treatment clinicians are willing to provide, and the implications for patients. My findings suggest patients with BPD are routinely labeled “difficult,” and subsequently routed out of care through a variety of direct and indirect means. This process creates a functional form of demedicalization where the actual diagnosis of BPD remains de jure medicalized, but the treatment component of medicalization is harder to secure for patients.
Introduction
Borderline Personality Disorder (BPD) and “difficult patient” status are intimately linked. One study found that “psychiatrists mentioned the diagnosis of Borderline Personality Disorder up to four times more often than any other diagnosis when asked about the characteristics of difficult patients” (Koekkoek, Meijel & Hutschemalkers 2006:797). Several more have indicated that almost all difficult patients have “borderline personality organization” (See Koekkoek, Meijel & Hutschemalkers 2006, Group for advancement of psychiatry 1987; Fiore 1988; Schwartz & Goldfinger 1981). The very symptoms and behaviors associated with BPD are linked with how providers define the “difficult patient.” Kelly & May (1982) found that behaviors such as mutilation, chronic illness, rule-breaking behavior, aggressive, uncooperative or won’t accept care, or need too much care, and are destructive, willful, attention-seeking and manipulative have been linked with negative attitudes toward patients. All of these descriptors have been applied to patients with BPD (See Luhrmann 2000; Nehls 1998, Nehls 1999). Manning (2000) has even argued that the category of “Borderline” emerged as a label to group patients perceived as difficult. Research spanning twenty years suggests providers continue to find clients with Borderline Personality Disorder more difficult than other mentally ill populations, including patients with schizophrenia (see Gallop, Lancee & Garfinkel 1989; Treloar 2009). The reasons for this association are generally explained by providers as being a result of patient behaviors.
Under the DSM IV, which was in use during the data collection of this study, to receive the BPD diagnosis, a patient had to meet five of nine criteria that include self-harming behavior, a history of unstable and intense personal relationships and dissociative episodes, or breaks with reality. (The DSM 5 definition incorporates minor wording adjustments). The criteria are (APA 1994:654):
A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior covered in Criterion 5.
a pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
identity disturbance: markedly and persistently unstable self-image or sense of self.
impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior covered in Criterion 5.
recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).
chronic feelings of emptiness
inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights)
transient, stress-related paranoid ideation or severe dissociative symptoms.
Recent estimates suggest a lifetime prevalence of 5.9% of the population or 1.4% at any given time in the United States (Grant et al 2008, Lenzenweger et al 2007). Carefully controlled trials show that patients with BPD are just as treatable as patients with Major Depressive Disorder, the most common diagnosis in the United States (Gunderson et al 2011). Zanarini et al (2010) found at a two-year follow-up 34.9% of patients had achieved remission (defined as not meeting criteria for a two-year period), and at a ten year follow-up 93% no longer met criteria for the disorder. The most prominent evidence-based treatments for BPD are Dialectical Behavioral Therapy (DBT) (see Linehan 2001, 1987, 1993), Mentalization Based Therapy (see Choi-Kain & Gunderson 2008, Bateman & Fonagy 2009) and Transferance-Focused Psychoherapy (see Clarkin et al 2007). Nonetheless, 3–10% of patients with a BPD diagnosis die from suicide (Soloff 2012) and one study found more than 70% attempted suicide (Soloff 2000).
This article uses Borderline Personality Disorder as an ideal-type case from which to examine “difficult patient” status as it relates to demedicalization. This article will first explore what the consequences of “difficult patient” status are in terms of care provision and treatment. And second, it will address the linkage between “difficult” patient-hood and de facto demedicalization.
Literature Review
Scholarly discussion of “difficult patients” goes back at least to 1970, when Papper suggested that physicians must work to address their failures with patients they found hard to work with or had trouble treating. While the original scholarship focused on patients as being objectively or inherently difficult, I use quotes around the term: later writers concluded that there was little objective, empirical basis for whom constituted a “difficult patient” or why. Kelly & May (1982) found that much of the literature attributed difficulty to specific patient behaviors. However, they also found that these studies lacked external validity, focused mostly on staff opinions, not actual patient behaviors, and that social structures were absent from analysis. Koekkoek, Meijel & Hutschemalkers 2006:798 presented similar critiques in their review two decades later. “In these studies, professionals were asked to rate the difficulty of certain behaviors, dependent on the patient’s diagnosis. Patients who were diagnosed as having borderline personality disorder were judged more negatively than were patients with other diagnoses—schizophrenia for example—although their difficult behaviors, such as expressing emotional pain or not complying with ward routine, were equal.” Therefore, historical arguments that “difficult patient” status was dependent upon specific patient behaviors have not held up. This has weakened the utility of the “difficult patient” construct in theoretical discussion since why it is attributed or what it fundamentally implies remains unclear. In more recent research, Koekkoek et al 2011:1050 created a model based on survey data suggesting that the primary explanatory variable in describing a patient as difficulty was “professionals’ subjective perceptions of patients.” They also found that patients having a larger number of problems and intensive service use were also important. This suggests that the structures in which patients are treated and clinicians’ ability to effectively help a patient may be closed tied to the “difficult” label. However, this study excluded psychotic disorders, and therefore cannot explain why, for example, patients with Schizophrenia or Bipolar disorder are perceived so differently from patients with BPD, even when they do exhibit similar behaviors.
What does difficult patient status mean then, and how can we best empirically evaluate this meaning? If two patients with different diagnoses can behave in the same way, but one will be labeled difficult, and the other not or less so, then what exactly does the word signify? Providers say they use the label “difficult” to signal that a given patient is behaving badly, and yet they do not actually bestow the label based on patient behavior, but rather, diagnosis. Since the provider-based explanations do not add up, what purpose does the label serve? By introducing other theoretical perspectives, the work of the difficult patient label may become clearer. On the simplest level, diagnoses generally operate to categorize someone as sick, rather than morally deviant—though these may not be mutually exclusive. A diagnosis also generally reduces stigma, by invoking the sick role (Davis 2009). However the sick patient labeled as “difficult” does not receive the benefit of reduced stigma. In fact, it is precisely their “difficult” sick role which stigmatizes them. In the case of BPD this may be particularly salient because stigma related to BPD may be largely contained within the healthcare system (Bonnington & Rose 2014).
The process whereby stigma is reduced (or not) through diagnosis is encapsulated in the literature on medicalization. Medicalization is often described as a mechanism for shifting non-medical deviance to medical deviance, often with an accompanying reduction in stigma (See Conrad & Schneider 1980, Conrad 2005, Conrad 2007). This suggests that one particularly fruitful area for understanding the impact of the “difficult” patient status lies with de/medicalization and the shift from morally deviant to medically deviant. Zola however (1972) viewed the distinction as grey, arguing that patients who might have previously been considered morally deviant may only achieve a tenuous level of morality with their sickness. He suggested that the line between moral deviance or badness, and sickness or madness, are much more fluid than they appear to be in the “badness to sickness” polarity. For patients categorized as “difficult” this may be especially true; they may highlight this fluidity most clearly. The relationship then between difficult patient status and medicalized status bears scrutiny, as they may be linked in important ways.
To give context to the frame of medicalization, the definition was crystallized by Conrad in 1975: “defining behavior as a medical problem or illness and mandating or licensing the medical profession to provide some sort of treatment for it,” and drew from Zola (1972) and Parsons (1951). To clarify this distinction, I have named the two components of medicalization using terms familiar to race and legal scholars, the first is definitional (de jure) and the second, treatment-related (de facto). De jure medicalization is definingsomething as medical, and de facto is treating something as medical. Beginning in 1992, Conrad introduced a separation between the de jure and de facto components, which he subsequently maintained. Medicalization is “a problem is defined in medical terms, described using medical language, understood through the adoption of a medical framework or treated with a medical intervention,” (2007:5; emphasis added). Going forward, definitions and treatment were not both required for medicalization to occur, and many scholars began to focus primarily on the former. Conrad summarized that the “essence of medicalization became the definitional issues,” (2005:3).
This is problematic on a number of levels, with the consequences born out in an increasingly inclusive, yet theoretically weakened medicalization literature (see Halfmann 2006). The result has been a series of case studies that often rely on the presence or absence of a definition as an indication of de/medicalization (See Conrad 2005, Frances 2013) or the presence or absence of a specific treatment as an indication of de/medicalization (See Williams 2004, Hislop & Arber 2003, Tiefer 2012, Rosenbaum 1995, Salcido 2004, Wikler & Wikler 1991). This past work then also is limited in that de/medicalization is not seen as a process that unfolds over time as medically classified behaviors, attitudes or identities shift into other frames of understanding (such as moral failings). This is the subtle reframing the data in this paper will speak too, thereby addressing micro-level elements of demedicalization.
The separation of medical practice from medical definitions as important markers of medicalization offers a limiting lens for viewing medical power. Davis makes this point succinctly: “medicalization and medical social control involve medical supervision and treatment. This dimension of medicalization has been analytically downplayed in the literature, the definitional issue made primary… However, medicine is an applied field,” ( 2009:220). Allowing either de jure or de facto evidence to justify the categorization of medicalization misses this important connection. While definitions may inform practices or constrain them, the two are also not interchangeable or inevitably linked. For example, if a condition exists in the DSM but clinicians ignore it and insurance doesn’t provide coverage (such as for caffeine addiction) then the definitional and the treatment components are divorced. Conversely, post-partum depression is widely treated and is not an official DSM category. In this case the treatment component and the definitional component are again distinct---yet both remain important indicators of medicalized status. This distinction between de facto and de jure components of medicalization is salient because demedicalization has not receive the same theoretical treatment as medicalization. For the “difficult” patient these lines may be especially blurry.
When specifically examining the issue of demedicalization, Conrad maintained his earlier requirement of de facto and de jure, stating that demedicalization “does not occur until a problem is no longer defined in medical terms and medical treatments are no longer deemed to be appropriate solutions,” (1992:224; emphasis added). Demedicalization continued to face a higher bar than medicalization (Davis 2006) and also continued to be viewed as an all-or-nothing category (Halfmann 2006).
Unfortunately, this didn’t lead to conceptual clarity within the demedicalization literature, as the inverse of the medicalization definition was implicitly adopted. Here too is a field of case studies, not always speaking directly to one other despite employing a similar theoretical language. Scholars were unable to agree on whether specific practices or diagnoses, such as sleep or child birth were being medicalized or demedicalized (see Halfmann 2006; Hislop & Arber 2003; Williams 2004).
However, this lack of internal understanding may be explained by the origins of demedicalization research. Even the most well-known example of demedicalization does not technically meet both of Conrad’s requirements. Homosexuality was removed from the DSM-II, making it de jure demedicalized. However, as late as 2003 prominent psychiatrist Robert Spitzer was still researching gay conversions and at least through 2007, homosexuality remained “treated” with medical interventions by some psychiatrists (Conrad 2007). Robert Spitzer, DSM III and IV architect, published a prominent peer-reviewed article about the treatability of homosexuality 30 years after the condition had been removed from the DSM-II (Spitzer 2003). He has recently rescinded his findings on the grounds of methodological issues (Spitzer 2012). Ultimately, this DSM author did not consider DSM status a compelling indication of what should be considered sickness.
This illustrates the larger point that medical labels and treatments are determined across a variety of sites by a variety of people who are unlikely to be entirely in agreement because medicalization is a contested process rather than an absolute category. There are important unanswered questions in Conrad’s definition: medical treatments are no longer deemed to be appropriate by whom? And not defined in medical terms by how many and where? If the ideal case example of homosexuality does not strictly meet the definition of demedicalization, surely this is a reason to either reconsider the precision of our definitions as Davis (2009)has proposed, or to recognize that de/medicalization are not absolute states, but partial occurrences as Halfmann (2006) has argued; and perhaps both.
In the context of the “difficult patient,” this issue is particularly salient. These patients may be canaries demonstrating where physician-based social control is breaking down. It is important to recall that Conrad & Schneider (1980:240) invoke deviance to elucidate how “medicine, especially psychiatry, has replaced religion as the most powerful extralegal institution of social control.” As “difficult” patients are functionally removed from medicalized status, they illustrate Zola’s (1972, 1975) argument that medicalized categories may only superficially paper-over moral deviance. Since “difficult” patients toe the boundary of patienthood as dispreferred medicalized entities whose stigma is not reduced through the sick role, they offer the opportunity to examine this phenomenon. Given the ongoing classification of patients with Borderline Personality Disorder as the quintessential “difficult patients,” BPD represents an ideal case within which to study the relationship between “difficult patient” status and de/medicalization and stigma. First, what are the consequences of “difficult patient” status in terms of care provision and treatment? And second, can “difficult” patienthood be linked to de facto demedicalization?
Data and Methods
Data Collection & Sampling
I conducted in-depth interviews with clinicians to reconstruct their diagnostic process and how they conceptualized the nature of the patient with BPD. I conducted interviews with 22 clinicians or BPD experts: 7 psychiatrists, 8 psychologists, 5 Licensed Clinical Social Workers (LCSW’s), and 2 BPD activists. Interviews ranged in length from 30 minutes to three hours, averaging about one hour each.
Clinicians were recruited using purposive and snowball sampling. I solicited participation through my personal and professional network, as well as through referrals from other clinicians. In order to avoid overlapping perspectives from the same reference group, I interviewed up to two additional clinicians from any one clinician referral source. Respondents ranged in career level from clinical residency to nearing retirement and practiced in either public or private in-patient or out-patient settings. Participants included an emergency room intake psychiatrist, a director of a major psychiatric center, a Veterans Affairs hospital staff clinician, those in private practice, others working in a university hospital setting and more.
All professional interviewees had direct clinical experiences with patients diagnosed with BPD. Areas of clinical expertise or specializations ranged from Cognitive Behavioral Therapy to Jungian Psychotherapy to Dialectical Behavioral Therapy. Interviews took place in person or over the phone. Each interview was recorded and fully transcribed. Interviews included clinicians from Wisconsin, New York, Maryland, New Jersey, North Carolina, Mississippi, Pennsylvania, Alaska, Illinois, and Minnesota. Interviewing continued until no new themes emerged across several interviews, a juncture termed sample saturation in Constructivist Grounded Theory (Charmaz 2006). Written, informed consent was given by all participants. This study was reviewed and approved by the University of Wisconsin-Madison Institutional Review Board.
Interview Content
Interviews were semi-structured and focused on the diagnostic encounter. Clinician training and education were established first, followed by an account of how they first became aware of borderline personality disorder. Subsequent questions focused on how they identified if patients had BPD, what a typical diagnostic encounter was like, and how easy or difficult the diagnosis was to make. Next, they were asked to discuss what steps they took after making a diagnosis, including informing the patient, and filling out insurance or charting forms.
Coding
Interviews were transcribed and coded using an iterative process dictated by Constructivist Grounded Theory (Charmaz 2006, Charmaz 2014). Segments of interviews were sorted into different categories until the categories accounted for all variations in the data. Codes were refined and reformulated through a process of incorporating more interviews into the coding structure. With each addition of data, codes were reconceptualized as needed, or validated by the data at hand, until all of the interview data fit within a clear coding scheme. Data were then organized by codes, such as “clinician perceptions of patient feelings” and “communication of stigma” and I analyzed variations within each code to understand the nuance and range of grouped responses. Some codes were readjusted in this process so that variations were more clearly explained by codes. This process was initiated manually, and ultimately assisted through N*Vivo. For the purposes of this article, I focused exclusively on how providers described patients with BPD in order to evaluate clinical perceptions of patients as a general group. Codes were then connected to the broader literature in the course of writing this article.
This study has some limitations: it represents a small grounded-theory sample of providers within one national healthcare system. The generalizability of these findings cannot be guaranteed, and these micro-level data cannot by themselves prove a macro-level phenomenon. Additionally, this study does not incorporate data from patient experiences. Explicit comparison of BPD to other personality disorders are missing, but could illustrate to what extent this condition is unique or if these issues relate to personality disorders or other chronic health conditions more generally. Finally, intermediary social structures such as managed care companies and the availability of pharmaceutical interventions remained outside of this analysis and must be examined more in-depth in future research.
Results & Discussion
Past research indicating that providers found patients with BPD undesirable and “difficult” was consistent with reports in my data (see Manning 2000). As one psychiatrist summarized: “In professional circles, borderline is often synonymous with ‘pain in the ass.’” Another LCSW opined “Well, they’re probably like the least popular patients to work with. Most people don’t like working with them. It’s too much work.” Part of this undesirability is linked to perceptions of how difficult these patients are to treat. One psychologist explained, “I know it’s going to be difficult to interact with them…they’ll probably get on my nerves.” The amount of work treatment involves is also a frequent concern. “They’re very taxing… patients because they call you all of the time,” a psychiatrist said. Furthermore, clinicians referenced the likelihood that treatment would not be effective. A psychologist summarized: “Not a whole lot of rewards come from beating your head against the wall with someone.”
While my interview questions focused on BPD, clinicians often volunteered the impression that this group was harder to treat than others. One provider shared an anecdote that “a schizophrenic3” may throw a chair at you too, but with “the schizophrenic,” it’s not their fault and you have sympathy, whereas with “the borderline,” you think they should be able to control themselves. This connection between behavior and responsibility for behavior linked with this specific diagnosis was found in past research as well (see Nehls 1998, Nehls 1999, Bonnington & Rose 2014). I will more deeply explore this link between patient responsibility and untreatability after discussing the outcomes of this belief-set.
Denial of Treatment
The main outcome of clinician beliefs that patients with BPD were difficult and possible at fault for their behaviors is that they often passively or actively denied care. The refusal of care is one means of denying one of the most fundamental sick role rights: access to treatment. “That’s why I think about that [BPD] as stigmatizing, you know? That others will look at that [diagnosis] and just give you or say, ‘you can’t really do treatment.’” Another echoed “I mean, I have a couple of colleagues who are right in there with me for sure. But they’re hesitant to provide that treatment.” Clinicians linked this back to the “difficulty” of these patients. “I think there’s a lot of misconceptions and again, I think it plays out to how people get treated and makes you look at the other side of that---why so many clinicians will literally tell you they will not treat people with borderline.”
The majority of providers described in my sample openly excluded the BPD patient population from care. “Colleagues don’t touch it,” one provider reported. All clinicians who described seeing these patients had stories of interacting with colleagues who didn’t understand their decision. “I mean, and they [colleagues] literally said ‘I won’t put any borderlines on my case, are you crazy? You treat people with borderline? Are you nuts?’” A director of a major psychiatric center who worked with patients across his career said “I remember when I first started doing this, nobody wanted to work with borderlines at all, and they’d send them to me because I was okay with working with them… you know this isn’t a terminal illness that you’re stuck with.”
This finding was also found by Bonnington & Rose (2014) who stated “many of those diagnosed with BPD were powerless to resist exclusion from treatment. These beliefs persist despite extensive evidence suggesting that a variety of treatment modalities, including Dialectical Behavioral Therapy (DBT), and mentalization based therapies can effectively treat BPD. Borderline patients retain a reputation for “untreatability,” (Gunderson 2008, Bateman and Fonagy 2009). This view that patients with BPD are untreatable continues to be espoused by many clinicians in spite of effective and widely recognized evidence-based medicine. This pattern used to also exist in the UK, but has since shifted to a more evidence-based perspective (see Pickersgill 2012). Importantly, providers are not suggesting that patients will not get better because they will be unable to access care, or because of some structural factor that would prevent them from using evidence-based treatments, or because there aren’t clinicians available to provide treatment. Most clinicians reported being familiar with DBT. Rather, these quotes from within my sample are about how despite evidence-based treatments, even if they did have access, patients really don’t get “better.” This is a discourse of untreatability, which makes sense if patients are perceived as manipulative moreso than mentally ill, a topic that will be discussed at length later.
Most clinicians describe this as an overt and active pruning process, where the diagnosis was a direct pass out of treatment. “I’ve known people that were fired by their psychiatrist because the psychiatrist thought they had BPD.” Another said patients often come to her primed, announcing “my psychiatrist told me, you know, they were going to fire me because, uhm, I’m too complicated or I’m too difficult.” Another clinician reported that in general, many of her patients with BPD had “been rejected for therapy. Gone in and had an initial visit and the therapist had said, ‘sorry, no can do.’” Other providers reported doing this pruning themselves: “I have actually cut back on taking a lot of borderlines, just because they’re very labor intensive and I’m kind of pulling back a little bit.” Or as another joked, “how do I treat Borderline Personality Disorder? I try to find another clinician (laughter).”
A minority of providers described denying treatment to patients as a more passive, or less widespread process. “I don’t know of anyone who says ‘oh sorry, I can’t treat you,’” one provider shared. Yet she also largely didn’t treat this population either, saying “it’s not really an area that I care to specialize in, and I certainly don’t want to open myself up to you know, that clientele.” At the time of her interview, she had only had two patients with BPD in memory on her caseload. She went on to add “the ones [colleagues] I talked to were never happy about it [treating BPD]. I don’t really know of anyone that enjoys that kind of work.” Other providers set inflexible ground rules for patients with BPD or had them sign a behavior contract that was not required with other clients. As one clinician summarized, sometimes therapists will “set up such rigid conditions, and obviously made such rigid judgments about their behavior that they [the patient] felt so insulted,” leading to the termination of treatment. This is striking, because whether passive or active, reports of denying care or making care difficult to access were pervasive across interviews, on the basis that patients with BPD were “difficult.” Bonnington & Rose (2014:13) found these practices fell into two categories. “a). [patients’] diagnosis was withheld and so was treatment or b). they were given the diagnosis but told no treatment was (locally) available.” The denial of treatment to patients with BPD is a pattern that has been consistently found in the literature and has not been logically linked to the actual ability to provide treatment (see Nehls 1999, Ramon et al 2007, Stalker et al 2005 and Hyde 2010). The data at hand suggest this is best explained by ongoing debates about the legitimacy of BPD as a sickness, the culpability of patients for their symptoms, and a discourse of untreatability which retracts sick role benefits and can be understood a process of de facto demedicalization.
Care as Contingent: Manipulative Patients Are Not Truly Sick
For many providers, the decision to not provide care was linked to the impression that patients with BPD were manipulative people who feigned sickness to gain access to attention. “Manipulative” was the most-commonly used adjective to describe patients with BPD among providers in my sample. Even clinicians who did not share the perception that patients were manipulative were nonetheless acutely aware that other providers felt this way. Providers who described patients as “manipulative” seemed to believe patients used a high level of intellectual involvement in orchestrating their deviant behaviors, rather than unintentionally acting out of their madness or sickness. Manipulation then operated as a code-word cuing morally deviantstatus.
One psychologist suggested that “maybe [patients with BPD are] so used to getting whatever they need because of their manipulative skills, that they receive the attention they want from people.” In his view, the end goal of exercising “manipulative skills” is time with or attention from clinicians. On one level, these patient behaviors are seen as a way of dominating the clinician, an inversion of the traditional hierarchy in the clinical encounter. These patients “need something to be able to control in their lives…so it comes again with the manipulation,” said another psychologist. On a more implicit level, this is a behavior, or set of behaviors, over which patients are perceived to have control. “Manipulation” is not a sign of sickness, or of needing help from a clinician, but rather an indication of immoral behavior. In this way, the word manipulation functions as a shaming device, framing patient behavior as moral badness rather than sickness and making the patient personally responsible for symptomatic behavior. This is in contrast to a perceived-biological sickness such as Schizophrenia, wherein the patient might manifest similar behaviors, but would be viewed as legitimately in need of medical help.
Taking this logic further, clinicians seem to openly question if patients with BPD are sick at all. According to Gallop, Lancee and Garfinkel (1989:819) “BPD patients are not perceived (by providers) as sick, compliant, cooperative or grateful.” In other words, symptoms that might be identified in the DSM as symptoms (difficulty regulating emotions or a history of intense and unstable personal relationships) are used to reclassify patients as both “difficult,” and not really in need of medical care. These two claims combined are what make “difficult” status link to immoral status, rather than sick status, leading to the effective re-routing out of care. This is consistent with Nuckolls (1992) who presents a cultural history of personality disorders, situating them within a moral discourse. In practical terms, Gremillion (2003)documented that patients labeled with BPD were denied care in eating disorder clinics. After being marginally, physically stabilized, they were removed from the ward in favor of caring for other patients who were actually sick rather than merely manipulative. These patients with BPD met all of the same markers for anorexia as other patients, but their anorexia was labeled as a form of acting out for attention, rather than a form of sickness, as it was for other patients. Despite identical physical markers, patients labeled with BPD were then denied care because they weren’t actually sick, even though the diagnosis of anorexia was otherwise made based on physical markers. Patients with BPD must meet standards of illness above other patients.
Discourse of Untreatability
This subtle shift allows clinicians to then operate within what I call a discourse of untreatability, since it frames issues with these patients in terms of their morality, rather than their sickness, removing them from the purview of reasonable medical intervention. This absolves clinicians of working with them, and reframes the discussion of what constitutes a mentally ill patient. As one ER psychiatrist described how he thought of a typical patient: “there’s a young female who comes in and she took five aspirin, six Benadryl and put a very superficial cut on her wrist because her boyfriend broke up with her.” In his mind, the typical patient with BPD does not truly need his medical help, because she is not really sick. Once it is called into question if the patient has achieved the terms of the Parsonian sick role (Parsons 1951), he or she may no longer be entitled to the benefits that follow, such as sympathy or health care. Clinicians then may wash their hands. And, as I presented above, many try to. Patients are routinely routed out of care, and their difficulty is marshalled as justification. “Difficult” operates as the code word to legitimize clinicians dismissing some patients. The sum effect of these practices is that many patients are denied care, which has been documented in reports of broader data and scope such as the 2010 Report to Congress on Borderline Personality Disorder (Hyde 2010). However, the logic behind this reluctance to treat based on the claims that patients are manipulating providers for attention remains suspect.
One clinician shared a story of an archetypal patient he had known. As he reported, this woman had been claiming to be suicidal for two years, calling the hospital every single day. The fact that she was still alive indicated to him that she wasn’t suffering from suicidal ideation, but rather was seeking attention, and keeping him from people who were, as he put it “really sick.” This echoes the research of Nehls (1999)who found that clinicians conceptualize cutting and suicidal behaviors among BPD patients as manipulative, whereas patients classify them as a temporary coping method for intense emotional pain. While it is possible that this provider was correct about this patient, another interpretation is that she remained suicidal, because she had not yet received effective treatment, despite ongoing efforts to seek help. The effective suicide rate among persons with BPD is between 3–10% making them one of the most suicidal populations of all mental illness categories (Soloff & Fabio 2008, Linehan et al 2006, Soloff et al 2012). It is hard to reconcile how they could both be the most suicidal patient group, and yet simultaneously perceived as presenting their suicidality as a means to attention. However, with the “difficult patient” label, this discourse of untreatability has a foundation in that suicidal and other behaviors ordinarily related to sickness can be recategorized as moral failings, falling under the umbrella of “manipulation.”
Disrupting the Discourse: Patients as Complex, Pleasant, Treatable
By highlighting providers who do not participate in the dominant discourse, I will demonstrate how this untreatability discourse operates. The above sections depict the stereotypes of a borderline patient, but there are clinicians who have mixed reviews of them as well as positive or constructive perspectives. These less-common clinician constructions of BPD patients as treatable, or even wonderful patients, which challenge the dominant discourse provide an important counterpoint.
Some clinicians valued these patients. As one psychiatrist explains:
I work with a whole group that specializes in [BPD]. We all find it a very interesting and challenging patient population who we like to work with. When I talk to colleagues who are back in the hospital or you know, just general psychiatrists, they often still have this attitude ‘ah, it’s a bad Borderline.’ You know, it’s pretty bizarre.
Several providers insist this population is skilled in different life areas. An activist revealed “any borderline you know is high-functioning. They are emotionally low-functioning.” One LCSW said “a lot of the borderline patients I’ve worked with have been higher level functioning and they’ve usually had, as I mentioned, some talent, whether it be musical or literature or that type of thing.” A psychiatrist agreed that “many of my borderline patients are professionals or successful in other areas.” This way of describing patients was not common, but demonstrates the social-constructedness of their undesirability.
Other clinicians focused on how treatment is effective and possible. Demonstrating not only an awareness of effective treatment options, this psychologist also reframed “manipulative” behavior as a symptom of BPD. “There’s an effective treatment. And most individuals with BPD really, they’re not affecting people’s lives negatively because they want to, or because they’re trying to be manipulative, they just want the pain to go away.” There is a link between seeing patients as both treatable and as sick, rather than as untreatable and morally deviant. While these kinds of statements were relatively less prevalent, they demonstrate that the prevailing view of BPD is not inevitable. The very pieces of evidence which most clinicians in my sample used to categorize patients as not sick, such as suicidality, self-harming behavior and “manipulation,” could also be used to defend patients’ legitimate occupation of the sick role.
And yet, clinicians who consistently described clients with BPD as mentally ill persons who were not bad represented only a handful of members of my sample. This is telling, because clinicians willing to be interviewed arguably were more specialized in treatment of BPD than the average clinician, so my sample is likely skewed towards providers who enjoyed patients with BPD. Clinicians who did not interact with these patients at all declined to be interviewed. They providers rebut the dominant untreatability discourse and were among the relatively rare few in my sample who elected to treat this patient group. They rejected the idea that patients with BPD were inherently more “difficult” than other patients, and were more likely to describe patients as both sick and treatable. This suggests that the dominant practice of denying care is very likely linked to perceptions of clients as morally at fault for their behavior, while the removal of these stereotypes is linked with successfully treating persons understood to be patients. In this way the “difficult patient” stereotypes of patients with BPD are recruited in defense of the status quo of the current unavailability of care. When “difficult patient” status is removed from the equation, providers also are more likely to provide treatment – some, enthusiastically. There is a clear relationship between the stigma of “difficult patienthood” and the de facto or treatment component of medicalized status.
Conclusions
Though not previously deconstructed in the literature, demedicalization requires both a de facto and de jure component within Conrad’s framework. A discourse of untreatability may trigger treatment-based demedicalization. If clinicians can be engines of de/medicalization, just as activists and other actors can be, this is significant. The availability of treatment options or clinical training is less relevant if clinicians are reluctant or decline to provide care in the first place, and otherwise normalize denying care through the use of words such as “difficult” and “manipulative.” In this way, clinicians, through their preferences, may be initiating a, perhaps incomplete, process of de facto demedicalization for Borderline Personality Disorder. As the case of homosexuality demonstrates, nuanced and partial examinations of de/medicalization are essential to advancing our theoretical understanding of mechanisms, as well as clarifying the significance of de/medicalized status. In this case, I would argue there is clear evidence of de facto demedicalization for patients with BPD, and that - given the particular quality of the ‘difficult patient’ discourse within my data - this could be widespread.
Secondly, this case suggests that “difficult patients” in general may invoke Conrad’s second criterion related to treatment for de/medicalization. In general, patients whom clinicians disprefer and are less eager to treat may be more likely to slip through the cracks of the system, less likely to receive the personal investment of their providers, and overall receive worse care, even when treatment may be technically or theoretically possible. Even as their condition may be de jure medicalized and considered a valid condition, these patients may face real barriers to receiving effective care due to clinician arguments that “difficult patients” shouldn’t be patients at all, because they are more appropriately classified as morally suspect people. The interpersonal component of care provision should not be underestimated as a necessary condition for treatment (see Charles, Gafni & Whelan 1997, Duggan 2006, Sleath et al 2014).
Overall the word “difficult” operates as a code-word linked with other associations such as manipulative and untreatable, which operate to rhetorically justify the re-routing of these patients from care through direct and indirect means. Thus, despite a de jure medicalized status, patients with Borderline Personality Disorder face barriers to de facto medicalized status. The longer term outcomes of this reluctance or refusal to treat may have long-lasting implications for patients who may give up seeking care, as well as for their families, and the criminal justice system. Importantly, the sick role does not guarantee a reduction of stigma, and may not be more humanitarian, particularly in cases such as this where patient-status is routinely questioned. Ultimately, the example of Borderline Personality Disorder illustrates the importance of considering de/medicalization as contested processes, rather than as absolute categories.
Research highlights
Borderline Personality Disorder and “Difficult” Patient status are tightly linked Demedicalization includes both labeling (de jure) and clinical (de facto) components “Difficult” Patient status may initiate a process of de facto demedicalization A discourse of untreatability provides moral authority for de facto demedicalization
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