Abstract
A new movement to drop the word “disorder” from PTSD focuses on stigma.
Keywords
< PTSD affects millions, yet is experienced as profoundly isolating.
Shawn Weismiller, U.S. Air Force
Retired U.S. Army General Peter Chiarelli, director of the organization One Mind, wants to redefine Post Traumatic Stress Disorder (PTSD). While a main priority of One Mind is to accelerate “the research-to-cure time frame exponentially,” a core element of its “paradigm-changing” program is advocating for changing PTSD to the lesser classification of “post-traumatic stress,” or “PTS.” Dropping “disorder” in favor of “injury,” Chiarelli’s organization hopes to reduce the stigma associated with PTSD. “Injury” can be overcome, “disorder” implies something permanent. As Chiarelli puts it, “No 19-year-old kid wants to be told he’s got a disorder.”
Thanks to Chiarelli’s campaign, “PTS” is increasingly accepted terminology in many military and policy settings. Indeed, former President George Bush has said publicly he would no longer use the word “disorder” when discussing veterans’ “post-traumatic stress” and earlier this year, Obama twice spoke about “post-traumatic stress.” Additionally, there are efforts being made to recognize June as “National Post-Traumatic Stress Awareness Month” and June 27, 2015, as “National Post-Traumatic Stress Awareness Day.” “Disorder” seems to be falling out of military lexicon.
But the change is fraught. In the wake of two large-scale wars involving more than 2.5 million U.S. soldiers, how we define and conceive of war-related mental distress is significant. Why, in this day of headline-grabbing veteran suicides and deadly shootings on military bases, would a decorated military veteran like General Chiarelli want to redefine a diagnosis that has served an indispensable role in securing the mental health treatment of veterans?
Thirty-five years ago, Vietnam veterans, along with allies in the mental health field, won a hard-fought campaign for the recognition of psychological wounds from war, establishing PTSD as a mental disorder. However, once a diagnosis is recognized and institutionalized, it can take on a life of its own. PTSD in 2015 is different than PTSD in 1980. In response, several advocacy groups—most with ties to the Pentagon and affiliated non-profit organizations—are now attempting to demedicalize PTSD. This marked shift in the diagnostic politics of PTSD highlights the vicissitudes of medicalization—the process by which social problems become defined and treated as medical in nature.
Diagnoses provide the interpretive framework by which amorphous symptoms and experiences are transformed and reified into disease categories subject to the intervention of medicine. As such, diagnoses can become, in the words of sociologist Phil Brown, “an arena of struggle” in which medical professionals and lay patient groups fight to secure diagnostic understandings that promote their particular interests. PTSD has long represented an exemplary case of successful, lay-initiated medicalization.
We join our separate research—Whooley’s archival work on the history of psychiatric classification and Smith’s ethnography on veterans’ returning from Iraq and Afghanistan—to explain the emergence of the movement to “drop the D”.
Medicalizing the Trauma of War
The process of defining a disorder does not necessarily end with its official recognition. It can continue in unanticipated ways that sometimes run contrary to the spirit of the original impetus. Instead, PTSD has undergone a series of changes since it official recognition by the American Psychiatric Association (APA) in 1980.
For the overwhelming majority of mental disorders, the underlying neurological and biological mechanisms are still not well understood. For this reason, the construction of diagnostic categories proceeds by expert consensus. Every decade or so, the APA meets to discuss and revise the Diagnostic and Statistical Manual of Mental Disorders (DSM), the “Bible of American psychiatry,” which defines criteria for every mental disorder. When constructing diagnostic categories, psychiatrists fall back on defining mental disorders by the presentation of manifest symptoms. This process is vulnerable to subjective interpretations and political influences. Thus, behind the DSM’s neat lists of symptoms are complicated histories; the final diagnostic categories often represent negotiated accommodations to competing interests. The history of PTSD, in fact, reflects these tensions. The diagnosis was co-created by psychiatrists and veterans’ advocacy groups.
Lay advocates seek a medical diagnosis for three primary reasons. First, a medical diagnosis legitimizes the experience of distress, as a diagnosis is thought to reduce stigma and alleviate personal responsibility. Second, it provides an interpretive schema to make sense of what can be diffuse and ambiguous problems. A diagnosis can explain the distressing symptoms a sufferer has been experiencing in silence, be it PTSD or fibromyalgia, and in turn, can serve as a basis for an identity. Finally, having a personal problem defined as “medical” is a means to secure resources like treatment, reimbursement, and disability support.
While mental distress from the trauma of war has been sporadically recognized under different monikers—among them, “shell shock,” “combat neuroses,” “soldier’s heart,” and “operational fatigue”—PTSD did not exist prior to 1980. As sociologist Wilbur Scott recounts, in the mid 1970s, Vietnam veterans, led by the group Vietnam Veterans Against the War (VVAW), sought to change the military culture around war trauma by medicalizing it. Along with sympathetic allies in the mental health field, notably Sarah Haley, Robert Jay Lifton, and Chaim Shatan, veterans fought for official diagnostic recognition for what was first termed “Post-Vietnam Syndrome Disorder” and later “Post-Combat Disorder.” This early diagnosis originated from what Scott referred to as “street-corner psychiatry” through “rap groups” run by VA outreach centers, and the diagnosis was consciously tied to the anti-war effort.
Why would a decorated military veteran want to redefine a diagnosis that has served an indispensable role in securing the mental health treatment of veterans?
After a decade of lobbying the APA, contesting the skepticism among psychiatrists who were ambivalent about a specific diagnosis for combat stress (DSM-I contained a “gross-stress reaction” diagnosis but it was dropped from DSM-II), veterans’ advocates secured the diagnosis of “Post Traumatic Stress Disorder.” With its inclusion in the 1980 DSM-III, the psychic consequences of war were acknowledged. Traumatized combat soldiers could be treated as psychiatric patients.
The Expansion of PTSD
From its inception, PTSD fit awkwardly in the DSM-III. As a disorder caused by a traumatic event, PTSD was always understood as emanating from social factors. This departed from the DSM-III’s biomedical model of mental disorders, which treats disorders as analogous to physical diseases. Changes to PTSD in subsequent editions of the DSM have sought to bring it into alignment with the prevailing model of mental disorders.
Like the DSM itself, PTSD has been expanded over the decades to include more and more cases under its purview. In this process, the distinct social nature of the precipitating trauma has been de-emphasized. First, the DSM-IV (1994) broadened the notion of what is considered a traumatic event. The DSM-III instructed psychiatrists to interpret trauma objectively as a recognizable stressor “generally outside the range of usual human experience” that would “evoke significant symptoms of distress in almost everyone.” The revisions for DSM-IV reoriented the diagnostic focus toward the subjective reactions of individuals; trauma became defined not by the inherent qualities of the event but by an individual’s response to it. The loss of a loved one (a sad, but normal stressor) is made equivalent with combat (a recognizably extraordinary experience) if the subjective reactions (avoidance, numbing, hyperarousal, etc.) to these events are similar.
Second, DSM-IV extended what it meant to “experience” trauma to include witnessing an event or receiving information about it. PTSD could occur in individuals that did not directly undergo the trauma. As anthropologist Allan Young observes, DSM-IV signaled “the repatriation of the traumatic memory… back home from the jungles and highlands of Vietnam.” Embracing this expansion, some psychiatrists argue that PTSD should be extended to non-life threatening events (for example, divorce) and that PTSD can develop from indirect witnessing of traumatic events, even on television. These changes have increased the number of potential traumas eligible for a PTSD diagnosis far beyond the bounds of the extreme violence of war.
Army Col. Michael J. Roy, left, who oversees exposure therapy at Walter Reed Army Medical Center, conducts a demonstration of a life-like simulator meant to help treat PTSD.
John J. Kruzel, U.S. Dept. of Defense
Diagnostic patterns clearly demonstrate that shift. PTSD now includes more civilians, women, and children. To win inclusion in DSM-III, veteran advocates extended the notion of trauma beyond combat to include victims of other types of physical trauma (like burn victims). Feminist groups long recognized the overlap between PTSD and the symptoms experienced by women suffering from what they referred to as “rape trauma syndrome” and embraced the disorder as a way to recognize the mental distress of rape victims. With DSM-IV’s explicit inclusion of sexual assault as a traumatic event, diagnostic practices changed, and PTSD is now twice as common in women as in men. Built on two different models of trauma—combat and rape—the concept has split along gendered lines, with veterans stressing geopolitical violence and feminists, interpersonal violence. Interestingly, even sexual trauma taking place within the U.S. military has come to be called “military sexual trauma”—not PTSD—thereby maintaining a gendered distinction.
Reassessing PTSD
PTSD has morphed into something broader, more civilian, and increasingly a part of international contexts (as journalist Ethan Watters has documented in his book, Crazy Like Us). At the same time, the U.S. has fought its first large-scale wars since the diagnosis was established. With these developments, the “drop the D” movement is reassessing the benefits—and pitfalls—of medicalization. Returning to the initial goals of PTSD’s medicalization—to decrease stigma, increase self-understanding, and open access to resources—we see that the evolving diagnosis fails to serve these ends for veterans, and, to a significant extent, the institution of the military as well.
First, medicalization has not necessarily alleviated the longstanding stigmatization of soldiers experiencing mental distress from war. Dozens of military health studies show that stigma remains a significant impediment to receiving PTSD treatment; roughly 60% of soldiers report that seeking mental health help would be perceived as weakness. Of the American soldiers in Iraq and Afghanistan who had a “serious mental health disorder,” only 40% stated that they were interested in receiving help according to Charles Hoge, doctor and retired Army colonel. A 2008 Rand study concluded that “just 53% of service members with PTSD or depression sought help from a provider over the past year, and of those who sought care, roughly half got minimally adequate treatment.” Self-stigma, the internalization of prevailing prejudices against mental illness, continues to undermine treatment among soldiers; those who met the criteria for a mental disorder were more likely than those who do not to associate the diagnosis with embarrassment and weakness. There is also a growing concern that the public awareness of PTSD has hurt veterans, particularly when seeking employment.
While mental distress from the trauma of war has been sporadically recognized under different monikers— “shell shock,” “combat neuroses,” “soldier’s heart,” “operational fatigue”—PTSD did not exist prior to 1980.
Our interviews with veterans confirm that “toughing it out” remains an essential part of military life. Given the associations between military masculinity and invulnerability, many soldiers suffer from mental and moral anguish, but their suffering is dismissed or disrespected by fellow service members and military superiors. As Nathan, an Iraq and Afghanistan veteran explained, “Usually the guys with PTSD won’t admit [to], you know, crying. They don’t have an issue. They can handle it fine. So, they don’t look into things. And it’s seen as a weakness.” Another veteran admitted his reluctance to take seriously the post-deployment health assessment, worrying that if he provided accurate responses about his mental health his fellow soldiers might wonder, “Is this guy a pussy or what?”
The gendering of PTSD can complicate female vets’ experiences.
Sen. Mark Warner, Flickr CC
Second, the changing face of PTSD has diluted its fit for soldiers trying to make sense of their particular experiences in war and their subsequent reactions. If one benefit of the medicalization of PTSD was to provide veterans with an understanding of their war trauma and a basis for shared identity, what happens when the dominant, cultural associations of the diagnosis shift? Of particular importance here is the mismatch between the masculine culture of the military and the increasing prevalence of the diagnosis among women and civilians. As a result, some veterans’ advocating the name change claim that soldiers “prefer the old terms such as ‘battle fatigue’ because anyone can get PTSD” and have petitioned the Defense Secretary that “any new name be unique to combat and utilize terms such as ‘war’ or ‘battle.’”
Mental health in the military—the paradoxical context in which health and routine violence coexist—is hardly straight-forward. Dropping the word “disorder” is possibly as thorny as getting the PTSD diagnosis recognized in the first place.
The concern around the expansive definition of PTSD joins a long-held criticism of medicalization within some antiwar veterans’ circles: conceiving of war trauma as mental illness is wrong because the behaviors that manifest themselves as PTSD are actually normal reactions to abnormal circumstances. PTSD pathologizes individuals instead of pathologizing the true toxin, war itself. Some activists therefore advocate jettisoning the diagnosis altogether and focusing their energies on combating the seemingly endless growth in militarism.
But what of the final goal of PTSD’s early advocates, that of securing resources? To be sure, the recognition of PTSD has opened access to resources that veterans would not otherwise have. The Iraq and Afghanistan wars are the first major wars since the institutionalization of PTSD, and PTSD has become the most common military service–related mental health diagnosis. Whereas access to resources undoubtedly benefits veterans, concerns over the cost have driven select members of the military and political leaders to advocate “dropping the D”. Former Defense Secretary Leon Panetta said that “post-traumatic stress will remain a critical issue for decades to come.” (Note the missing “disorder”). On the other side of the political aisle, former President George Bush, the person most responsible for today’s soldiers’ psychological distress, has stated that PTSD is mislabeled as a disorder and that calling it “post-traumatic stress” would go a long way in erasing its stigma.
While military leaders do not publicly state that the diagnosis strains military resources, the treatment costs are at odds with their overall mission; high rates of PTSD mean more expenditures, fewer boots on the ground, and more bad headlines. And these costs continue to swell; a 2012 study of six years of data from the Veterans Health Administration (VHA) by the Congressional Budget Office found the cost of treating a typical patient with PTSD in the first year of treatment averaged $8,300. From 2004 to 2009, the VHA spent $3.7 billion on the first four years of care for all the veterans tracked by the study. This is to say nothing of the tremendous VA backlog plaguing veterans’ care and compensation which deflates the true costs. The costs are particularly glaring given the mixed efficacy of PTSD treatments, which pale in comparison to the incredible advances in other domains of military medicine.
If “disorder”—a term suggesting chronicity—were dropped, perhaps soldiers might be more willing to seek treatment. “Injury,” a term more suggestive of something people can heal from, could change perspectives. Perhaps the VA would then be less strapped with providing indefinite care. And perhaps PTS would better reflect the unique experience of war trauma… So goes the thinking of those who would rename this multifaceted distress.
OneMind wants to destigmatize post-traumatic stress by “dropping the D.”
Resistance
Mental health in the military—the paradoxical context in which health and routine violence coexist—is hardly straight-forward. Dropping the word “disorder” is possibly as thorny as getting the PTSD diagnosis recognized in the first place. General Chiarelli and One Mind’s efforts have rekindled longstanding debates over how to publicly appraise and evaluate “invisible injuries.”
Resistance to the movement is vigorous. Matthew Friedman, director of the National Center for PTSD at the Department of Veterans Affairs, has campaigned against a change to “PTS” or “PTSI,” stating that “injury” suggests a short-term recovery process, whereas disorder better honors a condition that can last for decades. Dropping “disorder” may also jeopardize disability payments. Some wonder whether a change could be an attempt by the VA and Pentagon to eschew their accountability for long-term care. After all, the traditional diagnostic category has been instrumental in helping veterans secure long-term disability coverage and treatment. Other critics of the change note that dropping one word will not result in any difference, since the cultural associations are already there. “Schizophrenia,” for example, does not have the word disorder in it, yet it remains very much stigmatized.
For other critics, dropping “disorder” represents a mere nominal change further obscuring the reality that war is what psychologically harms people. Here the limits of medicalization may be seen. Does the transformation of war trauma into a medical diagnosis sufficiently capture the moral valence of the issue of war in the first place? Perhaps attention and effort could be focused less on helping those who cannot cope with the trauma of battle and more on the collective mobilization to avert such trauma from happening? If PTSD were considered a serious, dangerous public health threat, wouldn’t we want to prevent it in the way we do other public health threats, like cancer, cardiovascular disease, and obesity?
For now, the status quo has been upheld; the recently published DSM-V maintains the DSM-IV’s PTSD diagnosis. The D remains. The work group charged with reviewing the diagnosis rejected a proposal to include a subtype of PTSD for wartime trauma exclusively. In fact, by adding a dissociative subtype and a subtype for children six years and younger, the revision expanded the diagnosis.
Nevertheless, the history of the PTSD diagnosis reveals the extent to which medicalization can go awry for the lay groups who fought for the establishment of its classification in the first place. Once recognized, PTSD, like other diagnoses, is shaped by an array of interests and transformed into something no longer strictly moored to the original definitions. In the case of PTSD, members of the military brass—worried about stigma, high rates of prevalence, and rising costs—have allied with soldiers and veterans who are concerned with stigma, help-seeking, and identity to demedicalize PTSD and bring it back into the military fold. Given the vagaries of PTSD to this point, the movement might want to heed the experiences of their medicalizing pre-cursors and consider the potential unintended consequences of such a campaign.