A Madness for Identity & Consumer Autonomy

CHARLAND / A MADNESS FOR IDENTITY 335

2005 by The Johns Hopkins University Press

A Madness forIdentity:

Psychiatric Labels,Consumer Autonomy,

and the Perils of theInternet

ABSTRACT: Psychiatric labeling has been the subject ofconsiderable ethical debate. Much of it has centeredon issues associated with the application of psychiat-ric labels. In comparison, far less attention has beenpaid to issues associated with the removal of psychiat-ric labels. Ethical problems of this last sort tend torevolve around identity. Many sufferers are reticent torelinquish their iatrogenic identity in the face of offi-cial label change; some actively resist it. New forms ofthis resistance are taking place in the private chatrooms and virtual communities of the Internet, a do-main where consumer autonomy reigns supreme. Med-ical sociology, psychiatry, and bioethics have paidlittle attention to these developments. Yet these newconsumer-driven initiatives actually pose considerablerisks to consumers. They also present complex ethicalchallenges for researchers. Clinically, there is evensufficient evidence to wonder whether the Internetmay be the nesting ground for a new kind of identitydisturbance. The purpose of the present discussion isto survey these developments and identify potentialissues and problems for future research. Taken as awhole, the entire episode suggests that we may havereached a turning point in the history of psychiatrywhere consumer autonomy and the Internet are nowpowerful new forces in the manufacture of madness

Louis C. Charland

KEYWORDS: autonomy, bioethics, identity, Internet, men-tal illness, psychiatry

There appears to be a new psychiatric phe-nomenon emerging in the private chatrooms of the Internet, a novel syndromethat revolves around identity. At the same time,there are important ethical obstacles that preventpsychiatrists and bioethicists from studying thatphenomenon. The two themes are inextricablylinked. Psychiatry needs to study the phenome-non, but studying it poses complex ethical prob-lems. The purpose of the present discussion is todescribe the putative new syndrome and the eth-ical challenges involved in studying it.

The syndrome seems to be a sort of madnessfor identity. Its defining feature is a refusal bysome psychiatric patients to relinquish the iatro-genic identity provided by their medical diagnos-tic labels. In one way, there is nothing new aboutthe existence of refusals of this type; they proba-bly go back to the dawn of psychiatry. But there

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336 PPP / VOL. 11, NO. 4 / DECEMBER 2004

is another way in which the refusals we areconcerned with are novel. This is the medium inwhich they take place, namely, the Internet. Thatinfluences the form they take, which in turndetermines the kind of phenomenon we are deal-ing with.

The phenomenon we are concerned with islargely, perhaps entirely, a product of the partic-ular type of communities and social opportuni-ties that Internet culture has made possible. Inthis mostly ungovernable social universe, the forc-es of consumer autonomy are running amok.Many psychiatric patients have decided to retaintheir psychiatric diagnostic labels no matter what.They are now autonomous consumers in avery real social and economic sense. Three exam-ples illustrate this hypothesis. The labels in ques-tion are multiple personality disorder, borderlinepersonality disorder, and anorexia. In each case,consumers have mobilized their forces on theInternet to defend their right to wear and live bytheir labels. On its side, establishment psychiatryseems powerless to stop or control this powerfulnew force in the social manufacture of madness.The topic is urgent, because there are seriouspotential harms to consumers. What can be doneabout these new developments depends on whatwe can find out about them. This discussion isintended as a first step in that direction. To start,let us see how these developments fit in the con-text of psychiatric labeling and its associatedethical issues.

Applying and RemovingPsychiatric Labels

Ethical issues associated with the applicationof psychiatric labels tend to focus on cases wheresomeone is assigned a label they do not want andare helpless to remove it. Sometimes the labelitself is said to be bad because of what it sug-gests. At other times, those who do the labelingare also held to be bad because they impose thelabel without the subjects consent. One famousexample that arguably touches on all these ele-ments is hysteria. The victims in this case are thewomen who are labeled, the guilty are the maledoctors who do the labeling, and the label is bad

because it stereotypes and demeans women. Thisat least is one way of looking at the ethics of theapplication of this psychiatric label (Showalter1986).

Homosexuality is another ethically controver-sial psychiatric label. The label itself is not al-ways considered bad, because many homosexu-als are proud to be called homosexual. Ethicalproblems occur when it is proposed as a psychi-atric label that denotes a disease category. This iswhat happened when homosexuality was includ-ed as a mental disorder in the second edition ofthe Diagnostic and Statistical Manual of MentalDisorders of the American Psychiatric Associa-tion (American Psychiatric Association 1952).Its identification as a psychiatric disorder causeda vehement uproar and the label was eventuallyremoved from the manual (American PsychiatricAssociation 1973, 44). There exist poignant tes-timonies of how the disease conception of homo-sexuality caused harm to homosexual patients(Duberman 2002). The victims in this case werehomosexuals and the problem was the inappro-priate medical use of the label homosexual.

Other ethical problems with psychiatric label-ing occur when a legitimate label is imposedinappropriately and unjustly (Chodoff 1999).Such abuses are said to have occurred in theformer Soviet Union and elsewhere. In these cas-es, the label schizophrenia was apparently inap-propriately applied to people who did not medi-cally warrant the diagnosis. Generally, these werepolitical dissidents of some sort. The diagnosis ofsluggish schizophrenia played a part in theseabuses (Merskey and Shafran 1986). Although itwas originally a legitimate medical diagnosis, itwas eventually used for inappropriate politicalends. These cases of abuse are examples where amedical label is inappropriately and unjustly ap-plied.

These three examples illustrate one generalkind of ethical problem with psychiatric label-ing. The examples are all different but they sharea common theme. In each case, the ethical prob-lems arise from the fact that a psychiatric label isapplied. The identity of those who are labeled isnegatively compromised because a label is ap-plied. Iatrogenic identity here is bad. There is

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another general kind of ethical problem associat-ed with psychiatric labeling. It occurs when apsychiatric label is removed. This can happenwhen a label is simply abolished. But it can alsohappen when a label is significantly changed andimportant aspects of its original meaning arelost. In this case, the identity of those who arelabeled can be negatively compromised becausea label is removed. These two dimensions of theethics of psychiatric labels both implicate identi-ty. But there is an important difference. In thefirst case, there is an unwillingness to accept alabel. In the second, there is an unwillingness torelinquish it. When this unwillingness is extreme,it can lead to its own type of madnessa mad-ness for identity. This in any case is the initialhypothesis adopted here.

Ethical problems that spring from the removalof psychiatric labels have not been discussed asmuch as those that spring from their application.Consequently, in this discussion we focus onethical problems with label removal. The firsttwo examples of label removal we consider aremultiple personality disorder and borderline per-sonality disorder. The first case is real; it hasalready happened. The second is hypothetical; itmay happen. Part of what makes these examplesinteresting is the role that identity plays in howthe relevant ethical issues are framed. In eachcase, there is an unwillingness to relinquish theiatrogenic identity that a psychiatric label pro-vides. Often, this appears to be because individu-als with a diagnosis react to a change in labelingas if it somehow invalidates their experience un-der the label. This, incidentally, may offer onetherapeutic strategy for addressing the problemswe are considering. It is an area where the phi-losophy of psychiatry can make an importantcontribution to the clinical practice of psychia-try.

Our third example is an extreme and veryethically disturbing case where the unwillingnessto relinquish a label turns into a desire to indulgein it. It is not a clear case of label removal, butexhibits many of the same dynamics, notably, theunwillingness to abandon a label. Together theseexamples provide a novel perspective on currentdebates in bioethics and psychiatric ethics where

questions of identity are at stake (DeGrazia 2000;Edwards 2000; Elliott 2000a; Kramer 2000; Rad-den 1996). They illustrate a disturbing new mad-ness for identity.

Speaking of a new madness for identityrings of hyperbole and rhetoric. Is this really anew phenomenon? The current edition of theDiagnostic and Statistical Manual of the Ameri-can Psychiatric Association does have a diagnos-tic category that seems tailor made for our case,namely, Factitious Disorder, which involves theintentional production or feigning of physicalor psychological signs or symptoms (AmericanPsychiatric Association 1994, 474. It is also im-portant that the motivation for the behavior isto assume the sick role (American PsychiatricAssociation 1994, 474; emphasis added). As weshall see, this is not what seems to be happeningin the individuals we are concerned with. Typi-cally, they genuinely are sick and already have asick role, with all its associated signs and symp-toms. The problem is that they do not want togive it up. The Internet does provide interestingand novel opportunities for factitious disorder(Chambers 2004; Feldman 2000). These mighteven coexist with our putative identity syndrome.However, on a first analysis, the two conditionsdo not appear to be the same.

Problems With EvidenceThe Internet plays a major role in our discus-

sion, especially its private chat rooms. Yet thereis a surprising absence of data on how theseconsumer-driven forces affect the application andremoval of psychiatric labels. There does existinteresting work on the influence of the Interneton our sense of community and the search foridentity (Putnam 2000; Turkle 1995). But noneof it deals with our topic explicitly. Psychiatryhas also taken note of the Internet. However,these discussions tend to focus on issues of ser-vice delivery and education (Yellowlees 2000).Finally, in bioethics the Internet is just starting toreceive ethical scrutiny. In a fascinating discus-sion, Tod Chambers describes how easy it is topretend you are someone else on the Internet;how one can deceptively play and experiment

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with various virtual roles and identities includingthe sick role (Chambers 2004). This scenarioraises disconcerting possibilities for the subjectsof this discussion. These are psychiatric patientsand survivors who claim they are no longeralone now that they think they have foundkindred spirits on the net.

Chambers identifies one serious ethical prob-lem associated with the use of the Internet. Thereare other fascinating aspects of the role the Inter-net plays in our discussion. One is the fact thatpsychiatric labels may no longer be solely underthe control of psychiatry. Label change is subjectto powerful consumer influences mediatedthrough the Internet. At the origin of these chang-es lies the ethical principle of autonomy, whichguarantees the right to self-determination to men-tally competent individuals (Beauchamp and Chil-dress 2001, 57103). The problem is that drivenby the principle of autonomy and its self-deter-mining individual, the pursuit of identity on theInternet can lead to very serious harms. Howev-er, proving this gives rise to additional ethicalproblems. These concern the acquisition and useof evidence derived from the Internet.

First, there are ethical problems. How is con-sent to be sought if individuals want to remainanonymous or be known only through pseud-onyms? And what if some subjects are of dubi-ous competence to consent? How could one de-termine competence in such a case? Note alsothat it might be possible to gain better evidenceof what transpires in these chat rooms throughimpersonation than by joining as a declared re-searcher. But then that involves deception, whichraises difficult ethical issues of its own, and usuallyrequires special approval by ethics committees.Finally, there is the question of harm. It is possi-ble that conducting research in these domainsmight cause harms that are not immediately ob-vious to researchers or even subjects. How arewe to tell? What might they be? Without thisinformation, it is hard to assess the relative harmsand benefits of research for participants, whichis an important consideration in gaining approv-al for research on human subjects.

All of this is new territory for bioethics. In theabsence of any specific enough guidelines on the

topic, the provisional strategy adopted here hasbeen to err on the side of caution and strictlyfollow the injunction to do no harm. As a result,no direct evidence in the form of testimonies orInternet citations are provided. Hopefully, theindirect evidence referred to will be deemed suf-ficient to demonstrate that the problems identi-fied require immediate attention.

Second, there are also practical problems in-volved in researching our topic. Many Internetsites come and go and chat rooms can be espe-cially transitory. Even seasoned insiders can some-times have problems finding the sites they wantto. It can also be hard to keep up with changingsecurity technology and shifting addresses. In-deed, virtually all of the sites initially consultedin the research leading to this paper have goneinto the cyber underground. This is particularlytrue of the pro-anorexia sites, which are nowforbidden by leading Internet providers (Reaves2001; Udovitch 2002). Note that accessing someof these web sites may even be illegal and exposeresearchers to sanctions that range from legalprosecution to having ones Internet service cutoff.

All of these problems surrounding the acquisi-tion and use of evidence derived from the Inter-net pose great difficulties. Nevertheless, it is stillpossible to make some headway and that is ourpurpose here. At the very least, it should becomeevident that the developments identified here re-quire urgent attention.

Identity and the Harms ofLabel Removal

It is important to recognize that not all casesof label application and removal involve harms.Label application can lead to positive benefitsbecause it leads to successful treatment. Success-ful treatment, in turn, can lead to label removalbecause an individual has been cured, anotherpositive benefit. The examples discussed here aredifferent. In each case, we are concerned withhow label removal can lead to harms. Resistanceto label removal is one of the main harms dis-cussed. It is noteworthy that even label removalin the context of successful therapy can lead to

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harms. The pivotal factor in all these cases is thefact that individuals sometimes identify verystrongly with their labels. A good example of theharm that can ensue when a psychiatric label isremoved is provided in the autobiography ofNew Zealand author Janet Frame.

Frame vividly recounts her distress at findingout that, after years of being diagnosed as aschizophrenic, the diagnosis was incorrect. Shewrites that, the loss was great . . . the truthseemed to me more terrifying than the lie (Frame1985, 103). Her diagnosis was gone, officiallybanished by the experts (p. 103). In the courseof her testimony, Frame describes being strippedof a garment I had worn for twelve or thirteenyears (p. 103). She also explains what her diag-nosis came to mean for her: how in the midst ofthe agony and terror of the acceptance, I foundthe unexpected warmth, comfort, and protec-tion: how I had longed to be rid of the opinion,but was unwilling to part with it, and even whenI did not wear it openly I always had it foremergency, to put on quickly, for shelter from thecruel world (p. 103).

Although she resisted it at first, Frame eventu-ally surrendered and accepted her label. Whenshe was invited to relinquish it, she suffered anidentity crisis of a serious sort: the official plun-der of my self-esteem (p. 103). Happily, she final-ly managed to come to terms with giving up herlabel. Frames experience is a good example ofhow closely people can identify with their psy-chiatric labels and how they can suffer whenthose labels are removed. It is a fitting openingfor the more sinister problems with identity ex-amined here.

The Manufacture ofIatrogenic Identity

Psychiatric diagnostic labels can provide aniatrogenic identity for the persons they label. It isimportant to understand how this iatrogenic iden-tity is socially manufactured and sustained toappreciate how identity figures in the ethicalproblems associated with the removal of suchlabels. The role of the Internet has become in-creasingly prominent in psychiatric label forma-

tion and dissemination. It is now a powerfulreinforcing factor in the manufacture of iatro-genic identity and the ethics of labeling. In part,this is because the Internet provides a mediumwhere iatrogenic labels can be kept alive by con-sumers even though they have been psychiatri-cally abolished by the medical establishment. Butfirst let us look more closely at how identityfigures in the ethical issues we are concernedwith.

Many psychiatric patients suffer from disor-ders that directly implicate questions of identity.Some psychiatric conditions are actually calleddisorders of identity. In these cases, the disordera person is said to have can shape their concep-tion of who they think they are. Initially, manypatients resist the application of psychiatric la-bels. This certainly appears to be the case withborderline personality disorder, a label associat-ed with the most difficult psychiatric patients(Antai-Otong 2003; Gross et al. 2002; LoughreyJackson, and Wobbleton 1997). However, as weshall see, in some cases even a diagnosis of bor-derline personality disorder can eventually pro-vide a welcome sense of identity: iatrogenic iden-tity. You are, at least, a person with that disorder.

So the borderline diagnosis can provide a min-imal sense of identity for some people; it pro-vides them with an iatrogenic identity. The factthat this can happen with borderline diagnosis isespecially interesting, because the label is so of-ten actively resented by those who are labeledthat way. Other psychiatric diagnoses can alsoprovide a welcome sense of identity for psychiat-ric patients. In general, the initial sense of identi-ty provided by iatrogenic identity often gets am-plified when sufferers discover self-helporganizations and Internet sites devoted to theircondition. Not surprisingly, people identify withthe topics and other participants of these sites.Once they actively get involved and enter theprivate chat rooms, they are finally no longeralone. Iatrogenic identity is the key to this needto identify. The simple fact of stigma is probablya powerful motivating factor. This is becausestigma is often tied to an increased need foracceptance (Goffman 1963, 8). When you jointhese sites, your label is no longer a stigma; it is a

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shared and accepted feature of who you are. Youhave found people of your own kind and canbask in the solace that there are others like you(Goffman 1963, 2122). In this way, the Internethas come to play an increasingly important rolein the social manufacture of psychiatric labels.No doubt, this is an important new addition towhat some cynics have called the manufactureof madness (Szasz 1970). The expanding role ofthe Internet in the manufacture and promotionof psychiatric disease has not been adequatelyaddressed in contemporary psychiatric histories.In most the word does not even figure in theindex (Healy 2002; Shorter 1997). Recently, how-ever, it has attracted the attention of bioethicistCarl Elliott.

In his book, Better Than Well: American Med-icine Meets the American Dream, Carl Elliottexamines how the notions of personal fulfill-ment, self-realization, and enhancement haveshaped and influenced American medicine andwhat Americans expect from it (Elliott 2003).Much of his research is drawn from Internet websites sponsored by self-help organizations. Onenotorious example is a group of individuals whoadvocate for the right to have their limbs ampu-tated (Elliott 2003, 208238; see also Elliott2000b). Some members of this group are lobby-ing for the medical recognition of their disorder.Variously referred to as Apotemnophilia andAmputee Disorder, this condition is sometimesconfused with Gender Identity Disorder and BodyDysmorphic Disorder. Evidently, it is a conditionstill in search of a label. Many sufferers hope thiswill be a psychiatric medical label, largely be-cause of what this implies for treatment: medi-cally sanctioned and supervised amputations. El-liotts analysis strongly suggests that this socialmobilization of amputee seekersWanna-beeswould probably not exist without theInternet. He notes that, by all accounts, theInternet has been revolutionary for Wannabees(Elliott 2003, 217). This could be the first psy-chiatric disease manufactured in cyberspace.

The Internet appears to be a new addition tothe ecological niche philosopher Ian Hackingsays is required for the social birth and growth ofsome psychiatric illnesses. He shows how the

dissociative fugues of the nineteenth century weremade possible by the development of tourism(Hacking 1998). Of course, they were not creat-ed by tourism alone. But the social, institutional,and industrial circumstances that accompaniedthe emergence of tourism opened a new ecologi-cal niche in which travel became a lot easier.Individuals suffering from amnesia or dissocia-tive episodes could travel relatively easily if theyfound the means. It was now possible to sufferfrom fugue.

In another related study, Hacking shows howthe epidemic of multiple personality in recenttimes emerged out of a new understanding oftrauma and child abuse and a peculiar Americanobsession with the family (Hacking 1995). Hishypothesis is that a certain set of social circum-stancesa particular ecological nichewas re-quired before the multiple personality epidemiccould take its hold on popular consciousness.

Likewise, Carl Elliotts research capitalizes onthe fact that most psychiatric disorders now havesupporting organizations and web sites for suf-ferers. Each disorder has its own virtual com-munity on the Internet. Some of these web sitesare partially or entirely created and supported byindustry. Others are entirely consumer driven. Inboth cases the Internet is the common denomina-tor. Because of its accessibility and limitless geo-graphical range of action, the Internet has playeda pivotal role in the creation of these virtualcommunities. In the words of Robert Putnam,computer mediated communication can sup-port large, dense, yet fluid groups that cut acrossexisting organizational boundaries, increasing theinvolvement of otherwise peripheral participants(2000, 172). This is an excellent example ofwhat Hacking refers to as a vector in an eco-logical niche.

Apparently, then, the Internet is a new addi-tion to the ecological niche in which mental dis-orders rise and fall. It permits new forms ofcommunity association; a sort of cyberbalki-naization where like-minded individuals can joinand share in a special inner circle (Putnam 2000,178). These are not typical self-help groups likethose where members sit in a circle talking. Pri-vate chat rooms, in particular, provide a particu-

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larly paradoxical form of community involve-ment. They are solipsistic communities. Unliketraditional sit-down self-help groups, participantsin chat rooms are strangely isolated in their ownpersonal protective cyber bubbles. At the sametime, they are sometimes immensely open andvulnerable. Normal rituals and procedures ofsocial interaction are different or inapplicable inthese chat rooms. Many participants never actu-ally meet in person and some probably wouldnever want to. Intimacy is both heightened, butalso more artificial, because it is often artificiallyrestricted to a few key topics. It is also morefragile, because people can come and go, areaccepted or banished, with little accountabilityor recourse. Indeed, cyber friends seem to bemore interchangeable and replaceable than realones. Finally, there is no proverbial coffee andeveryday chit chat after the meeting, becausemeetings usually never really start or end; theyare eternally ongoing, always there, at the clickof a mouse.

Some of these virtual disease communities areopenly funded by the medical and pharmaceuti-cal establishment. Indeed, the suggestion has beenmade that pharmaceutical companies sometimesengage in the creation of such virtual communi-ties to market the existence of a new diseaseconcept to prepare the way for the medication,which is still in development (Moynihan 2003).However, other virtual disease communities aregenuinely self-help projects run by real psychiat-ric survivors. Most of these web sites provideinformation about the disorder in question, aswell as links and referrals for consultation aboutthe disorder. Especially significant is the fact thatthey almost always provide chat rooms wheresufferers can share their experiences of what it islike to live and cope with their disorder. Thesechat rooms offer solace and solidarity for thepain and alienation sufferers usually experienceas the result of the stigma associated with theirdisorder (Elliott 2003, 218; see also Goffman1963, 22). Finally, many sites engage in advoca-cy of some sort. Typical advocacy themes includefighting the stigma associated with a particulardisorder, challenging or promoting various treat-ments, and even sometimes arguing for the appli-

cation or removal of labels for psychiatric disor-ders. There is now a web site advocating for thepsychiatric baptism of the label Body IntegrityIdentity Disorder, the latest proto-psychiatric la-bel for amputation seekers.

Participation in these psychiatric virtual com-munities probably strongly reinforces the iatro-genic identity of their members. Validation isboth sought and found. As Elliott notes, on theInternet you can find a community to which youcan listen and reveal yourself, and instant valida-tion for your condition, whatever it may be(Elliott 2003, 217). For many sufferers, sharedInternet chat rooms are the only route to therelief of knowing that they are no longer alone, amantra that resonates across this virtual world.For many of these geographically isolated andsocially alienated identity seekers, all they haveis the Internet, their own troubled lives, and theplace where those two things intersect (Elliott2000b, 84). The solidarity made possible by theInternet thus provides solace through shared ex-perience and companionship. Because these areall positive benefits, they reinforce the sense ofidentity provided by the original diagnosis. As aresult, people probably become more attached totheir diagnosis and iatrogenic identity. In effect,their identity becomes increasingly defined by,and inextricably intertwined with, their diagno-sis. Philosopher Ian Hacking calls this processthe looping effect of kinds.

The looping effect of kinds occurs when peo-ple classified in a certain way tend to conform toor grow into the ways they are described (Hack-ing 1995, 21; see also Elliott 2003, 227234).Classification of this sort is an interactive phe-nomenon. This is because the classifications thatdo the classifying interact with the people clas-sified by them (Hacking 1999, 123). This givesrise to the looping effect that connects what isclassified with what does the classifying (Hack-ing 1999, 105, 121). In this spiraling dialecticalprocess, each elementthe classification and theclassifiedmutually reinforce and sustain eachother as they evolve jointly. There is considerableevidence that the Hacking looping effect is agenuine sociological phenomenon. In his workon psychiatric labeling, Thomas Scheff refers to

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something very similar, which he calls feedbackin deviance amplifying systems (1966, 97101).Edwin Lemert describes a related phenomenoncalled secondary deviance (1972, 63). In all ofthese cases, the focus is on how labels becomeintegral organizing factors in the lives of theindividuals who are labeled, as they search forvalidation and acceptance by bonding with oth-ers of their own kind.

Elliott and Hacking fail to mention one cen-tral aspect of the manufacture of iatrogenic iden-tity, namely the role of autonomy. Compared toprevious ages where paternalism was the domi-nant ethical and political ideology, we now livein an age of autonomy where the right to self-determination of the individual is paramount.Autonomy is enshrined in both law and ethics inthe doctrine of informed consent (Beauchampand Childress 2001, 57103). It is also manifestin the openness to pluralism and diversity soprevalent today. Autonomy also has economicdimensions and is reflected in the important placeof customer choice and satisfaction in our con-sumer culture. These combined social manifesta-tions of autonomy have had dramatic conse-quences for the practice of psychiatry and themanufacture of psychiatric labels.

At no time in the history of psychiatry havemembers of the public exercised so much powerover the psychiatric establishment that servesthem. Things were not always so. Before psychi-atry, there were quite simply no psychiatriclabels. For example, speaking of the historicalsituation in England prior to the development ofpsychiatry as a profession, historian Roy Porterstates that particular specifications of madnesswere, of course, socially constructed (1987,33). However, he points out that they wereconstructed out of grassroots experiences andcommunity tensions rather being essentially med-ical codifications serving the interests of a psyprofession or a therapeutic state, as arguablythey eventually became (Porter 1987, 33). Thingschanged with the development of psychiatry as adistinct clinical profession. Labeling then enteredan age of psychiatric paternalism and the defini-tion and deployment of psychiatric labels wasthe exclusive prerogative of the psychiatric pro-

fession (Goldstein 2001; Scull 1993). Neitherpatients nor patient groups were consulted whenpsychiatric labels were applied and removed. To-day, psychiatric labeling is a much more complexprocess, subject to numerous social, political,and economic interests (Healy 2002, 129178).The examples below also testify to this. They aremeant to illustrate the thesis that the removal ofpsychiatric labels can lead to difficult ethicalproblems that are different from those normallyassociated with the application of labels.

Multiple PersonalityDisorder

Multiple Personality Disorder has gone outof existence (Hacking 1995, 17). The officialname for what used to be called Multiple Per-sonality Disorder is now Dissociative Iden-tity Disorder (American Psychiatric Association1994). The old label is now only mentioned as areminder of the new labels origins. In the rele-vant DSM section, it is stated in brackets: (for-merly Multiple Personality Disorder).

This change in the psychiatric labeling mightlook like a simple case of exchange but it is not.It involves the replacement of a label that de-notes one thing by a new label that denotesanother. The change is therefore not merely cos-metic; it is materially significant. According tothe scientific authorities responsible for initiat-ing and implementing the change, the reason forthe amendment was to focus on the real patholo-gy involved in the original Multiple Personalitylabel. The point is that integral multiple person-alities are not the focus of the pathology in ques-tion. Rather, the fundamental problem is a disin-tegration of identity in one personality. The realproblem then is one of integration. It affectsidentity, consciousness, and memory. In the wordsof Robert Spitzer, the architect of the change,the problem is not having too many personali-ties, it is having less than one personality (Hack-ing 1995, 18). In effect, a theoretical commit-ment to the existence of multiple personalitiesthought to be real has been replaced by a com-mitment to the presence of two or more identi-ties or personalities or personality states. Pres-

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ence in this case means present to consciousness.So although two or more identities or personal-ities or personality states may be said to bepresent by subjects, and although they may beexperienced as real, like delusions, they arenot real. Multiple personalities during the reignof DSM-III were real, but after DSM-IV theywere not. That surely is a big difference; fromreal entity to delusional figment.

The change did not go unchallenged. Supportgroups and other interested parties protested(Hacking 1995, 269 nt. 8, 270 nt. 20, 271 nt.31). Still, the change went ahead. Physicians couldno longer write MPD as a diagnosis. The In-ternational Society for the Study of Multiple Per-sonality and Dissociation had to change its name,and did. It became The International Society forthe Study of Dissociation. The case of MultiplePersonality Disorder is therefore a clear exampleof label removal. What were the ethical issuesinvolved?

Any analysis of the ethical issues involved inthe change from Multiple Personality to Disso-ciative Disorders will probably vary dependingon whose interests are involved. Because of themany interests involved, the situation is compli-cated. In his famous study on the topic, philoso-pher Ian Hacking traces the political, social, med-ical, and moral factors in the rise and fall ofMultiple Personality Disorder (Hacking 1995).One of the lessons of his account is that none ofthese factors can really be studied in isolation.Nonetheless, it should be possible to say a fewthings about the clinical circumstances of pa-tients during these developments. Consider, forexample, the possible harm to patients impliedby the sort of diagnostic change in question.There are important considerations here.

Suppose you are a patient diagnosed withMultiple Personality Disorder during the DSM-III era. Imagine that after being encouraged tofirst accept the existence of your multiples, youhave spent the following two years talking andnegotiating with them under the guidance ofyour therapist. One day your therapist informsyou of a decision by the American PsychiatricAssociation that your multiples are no longerthought to be real personalities. They are merely

delusional figments of your disorder. Your prob-lem is not that you have too many personalities,but rather that you do not even have one. It ishard not to think that this would result in seriousiatrogenic trauma. This is especially true giventhat the patients in question already suffer fromsevere problems with identity. The sudden changein diagnosis simply compounds these originalproblems. From a clinical perspective, then, thereare good reasons to believe that as a matter ofprinciple the proposed change constitutes a plau-sible potential harm to patients; quite likely, avery serious harm. Without access to actual clin-ical records or personal testimony, it is hard tovalidate this claim empirically. But as an argu-ment based on principle, the worry is still worthtaking seriously.

There is some indirect evidence that the changein diagnosis from Multiple Personality to Disso-ciative Disorder may have caused actual harm topatients. It can be found on the numerous websites sponsored by interested individuals and sup-porting organizations. But the evidence is notuniform. One reaction is denial that any signifi-cant change has occurred. The two diagnoses aretreated as equivalent or the change is regarded asirrelevant. In one case, the sponsoring organiza-tion officially states that they simply disagreewith the change. Indeed, in a large number ofcases, individuals and organizations have simplyretained the old language of multiples and itsassociation with real alternate personalities.

Evidently, the medical death of a psychiatriclabel is not always final; there can be consumerlabel survival and immortality after death. Thisis a consequence of the power shifts that haveoccurred in this new age of autonomy. Patientautonomy now includes the ability of patients tocontest and defy the nosological edicts of medi-cal authority. You can remain a multiple if youwant to. One way to interpret these reactions isdenial in the face of real harm. Giving up themultiple label is simply too confusing and dis-tressing, and so many patients have organizedthemselves to keep it. Together with the plausibleimaginary clinical scenario painted, these obser-vations should constitute sufficient evidence thatin some cases, the removal of a psychiatric label

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is likely to lead to harm. This is an issue inpsychiatric ethics that deserves careful attentionas psychiatric labels continue to appear and dis-appear.

Borderline PersonalityDisorder

The example of Multiple Personality Disorderwe have just discussed has actually taken place.There is some evidence for believing that it repre-sents a case where label change can lead to seri-ous harm for patients. Another more speculativebut timely example is Borderline Personality Dis-order. In this case, there are good grounds tobelieve that label change may happen. This couldcause serious harm to patients currently diag-nosed with that disorder who have finally foundan identityan iatrogenic identitythrough theirdisorder. Again, these are patients who alreadyhave problems with identity. This compoundsthe possible harms of label removal.

Borderline Personality Disorder is currentlydefined as a pervasive pattern of instability ofinterpersonal relationships, self-image, and af-fects, . . . marked by impulsivity beginning byearly adulthood and present in a variety of con-texts (American Psychiatric Association 2000,710). Typical manifestations include emotionallyunstable behavior, suicidal threats, manipulation,inappropriate and intense anger, a chronic senseof emptiness, as well as other signs and symp-toms. A central feature of the disorder is a per-sistently unstable self-image and sense of self(American Psychiatric Association 2000, 710).In the current DSM, Borderline Personality Dis-order is grouped with three other personalitydisorders in a cluster. It is part of the Cluster Bdisorders, the dramatic ones. The Cluster Bdisorders are the Antisocial, Borderline, Histri-onic, and Narcissistic Personality Disorders(American Psychiatric Association 2000, 685).The remaining six personality disorders aregrouped in Clusters A and C.

At present, all the DSM personality disordersare classified categorically. This is in keepingwith the DSM general categorical orientation.However, there is an alternative way of viewing

disorders of personality, namely the dimensionalapproach. On a dimensional view, personalitydisorders represent maladaptive variants of per-sonality traits that merge imperceptibly into nor-mality and into one another (American Psychi-atric Association 2000, 689). This is in starkcontrast to the categorical model, where person-ality disorders represent qualitatively differentclinical syndromes (American Psychiatric Asso-ciation 2000, 689). There are good reasons tobelieve that the current categorical scheme forpersonality disorders may be replaced by a di-mensional one in the next edition of the DSM,namely, DSM-V (Charland 2004). The argumentsare complex. The main reason cited in defense ofthe change is that the current categories for per-sonality disorders have not been sufficiently em-pirically validated. To put it bluntly, there is notenough evidence to believe that the existing DSMclassifications actually capture real pathologiesof personality. In effect, the current classifica-tions are arbitrary collections of diagnoses drawnfrom diverse sources without a clear rationale orexplicit structure supported by empirical re-search (Livesely and Lang 2000, 34; see alsoLivesely 2003).

There is therefore a very good chance that thecurrent DSM personality disorders may be radi-cally revised in the next edition of the DSM. Theadoption of a dimensional model would repre-sent a drastic change, a significant paradigm shift(Kuhn 1962). It is not clear whether or howmuch of the original classifications and theirlabels would be retained. In some dimensionalproposals, probably most current terms for thesedisorders would be abandoned. What if this hap-pened?

There are now many consumer web sites de-voted entirely to Borderline Personality Disor-der. Many of these are for persons who care forpersons with the diagnosis. In these sites, care-givers can find information about the disorderand current treatment alternatives. Other sitesare more exclusively targeted to borderline indi-viduals themselves. These usually offer chat roomsto share experiences with fellow borderlines. Be-cause borderline individuals tend to generate andexperience a lot of friction in their dealings with

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professional and family caregivers, these chatrooms offer a sort of sanctuary away from thenormal reprimands borderlines encounter in theirdealings with the outside world. The chatrooms evidently provide welcome relief for theexasperated borderline individual. However, atthe same time, they also reinforce and validatethe borderline diagnosis. They are a strand in IanHackings looping effect of kinds, as men-tioned.

Many of the borderline individuals who useand visit the borderline chat rooms are survi-vors trying to learn to live with their diagnosis.Apparently many do not question the diagnosis.They assume it is valid. In this context of solidar-ity and sharing, the borderline diagnosis proba-bly provides a sense of identityiatrogenic iden-tityfor persons who are clearly plagued byserious identity problems and disturbances. Ittherefore seems plausible that the abolition ofthat diagnostic label could cause serious harmand confusion to affected individuals. This con-clusion, however, is only tentative and somewhatspeculative. The evidence alluded to here is basedon what can be gathered from borderline chatrooms from the outside by an outsider. Evidencefrom borderline insiders has also been consulted,but those persons have chosen to remain anony-mous.

Pro-AnorexiaThe search for identity can also take a dark

turn in the unregulated virtual communities ofthe Internet. Some identity seekers attempt toreinforce their sense of iatrogenic identity byindulging in their disease. This is a telling illus-tration of Lemerts self-defeating deviance(Lemert 1972, 85). Certainly, these individualswould surely resist label removal of the officialsort. But they even appear to resist label removalof a therapeutic kind. They do no want to getwell and instead indulge in how to be sickmore effectively. In this third example, the searchfor identity has degenerated into a full-fledgedmadness for identity.

Consider the fact that there are pro-anorex-ia, pro-bulimia, and even pro-cutting sites

and chat rooms on the Internet. In these virtualcommunities sufferers laud each others effortsto starve and cut themselves. Some of these sitespost pictures that may put researchers at risk ofbeing charged with pedophilia and other por-nography-related offences. In this case, ethicalproblems in research are compounded by legalones.

Because these ethically questionable practicesso obviously cause harm to vulnerable psychiat-ric patients, is it not imperative that psychiatristsand bioethicists figure out how to study them?Yet this is a domain where exact references andcitations might be very harmful. In effect, theycould function as advertisement for these dan-gerous sites and very likely put vulnerable andlonely identity seekers at risk. Some survivorsspeak of the risk of being triggered by acciden-tal visits to these pro disease sites.

Psychiatrist David Healy traces the origins ofthe modern syndrome of anorexia nervosa to the1870s. He describes successive theories and de-scriptions of the condition, starting with the workof Charles Lasgue and William Gull, throughPaul Janet, to more recent accounts like the oneprovided by David Garner and Paul Garfinkel(Healy 2002, 359). On the whole, Healy appearsto consider anorexia a transient mental illnessof the sort Ian Hacking describes in his book,Mad Travelers (Hacking 1998). That is, he viewsit as a kind of mental illness that is inextricablytied to specific social and historical circumstanc-es, including, notably, the development of theweighting scale (Healy 2002, 361). Note that forHealy, calling an illness transient in this sensedoes not exclude chronic, life-long, mental ill-nesses of great severity. In this, perhaps, his useof the term departs slightly from Hacking, forwhom transient illnesses are perhaps slightly lesssevere. However, what seems sure enough is thatfor both of them anorexia and its pro-anorexiamanifestations constitute severe mental illnessesthat at the same time can be called transient in animportant sense. In Hackings terms, the pro-anorexia syndrome we have just described sug-gests that the ecological niche of anorexia nowincludes a new vector (Hacking 1998, 5181),namely the Internet. Slang and colloquial terms

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mark the arrival of this new form of anorexia.We now live in an age where there are weborex-ics (Schmitt 2004).

How Novel This Madness?We have considered three examples of what

appears to be a disturbing new madness for iden-tity taking place on the Internet. Based on theevidence consulted for the present article, it isimpossible to say conclusively whether the threeexamples of label retention discussed here form aunified syndrome. They do appear to form a fam-ily, with shared resemblances and overlappingthemes. Further research is required before any-thing more concrete can be said. Nevertheless,despite the poverty of the available evidence, it ishelpful to try to distinguish the phenomenon wehave been discussing from other related psychi-atric conditions with which it might be confused.

At the start of our discussion, we dismissedthe possibility that the syndrome we are con-cerned with is simply Factitious Disorder. Thereason for this claim should now be clear. In eachof our three examples, the individuals in ques-tion already are sick and have a sick role. Theyare not healthy individuals who feign signs andsymptoms in order to assume a sick role. Theproblem is that they do not want to relinquishthe sick role they have. As we saw, in some cases,they even want to retain and reinforce their sickrole with a vengeance, by indulging in it. None-theless, the suggestion that our syndrome mayultimately be a new variant of Factitious Disor-der is worth keeping in mind. Settling that ques-tion would require clinical data, which as wehave seen, is practically and ethically hard toacquire. For the time being, the wisest courseseems to be to consider the syndrome describedhere to be a distinct from Factitious Disorder.

Our discussion is obviously heavily indebtedto Carl Elliotts fascinating account of amputeewannabees and his description of their specialInternet culture; the ecological niche in whichtheir disorder thrives. However, it is importantto appreciate that the phenomenon describedhere is quite different. Elliotts wannabees dohave problems with identity. In part, they are

striving for medical recognition of their condi-tion as a genuine medical disorder; they seekiatrogenic identity. This is very different from thecases we have considered, where the concern isto retain an iatrogenic identity that already ex-ists. Note that Elliotts wannabees do not appearto be cases of Factitious Disorder either. Themain reason is that their signs and symptomsappear to be mostly genuine. They do not inten-tionally produce or feign their signs and symp-toms in the manner required for a diagnosis ofFactitious Disorder.

One other possible diagnosis for our threecases comes to mind. This is hysteria. As a medi-cal diagnostic label or category, the term hysteriahas fallen out of favor in modern psychiatriccircles. At the same time, the term keeps onresurfacing outside psychiatry. In the words ofone commentator, no term so vilified is yet sopopular; none so near extinction appears in bet-ter health (Slavney 1990, 3).

Despite the fact that the label hysteria hasfallen into medical disfavor, some clinicians in-sist it is still useful (Healy 1993; Slavney 1990).But generally it is outside medical circles thathysteria is popular. One immensely fashionableaccount has recently been articulated by histori-an and cultural critic Elaine Showalter. The syn-drome she describes bears some resemblance tothe problems of identity described here. It istherefore worth asking whether our putative newsyndrome may be a form of hysteria of the sortdescribed by Elaine Showalter. So, could the ex-amples we have considered simply be manifesta-tions of the hysterical epidemics discussed inShowalters provocative book, Hystories (Show-alter 1997)? She does list anorexia and multiplepersonality among the hysterical epidemics shedescribes. Is this maybe the correct interpreta-tion of our putative new syndrome? Again, toreally answer this question conclusively we needbetter clinical evidence. But even on a very gener-al level the diagnosis of hysteria seems off themark, at least as it is formulated by Showalter.

In her book, Showalter redefines hysteriaas a universal human response to emotionalconflict (Showalter 1997, 17). She claims it is amimetic disorder; it mimics culturally permissi-

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ble expressions of distress (Showalter 1997,15). The key to hysteria is the interdependencebetween mind and body (Showalter 1997, 12).Initially, hysteria was thought to be an illness ofthe body that affected the mind. Later it becamean illness of the mind that affected the body(Showalter 1997, 14). As indicated, it is a cul-ture-bound syndrome. And so, signs and symp-toms of distress are taken from a local pool ofsocially accepted manifestations of distress. Vari-ous types of hysteria thrive and succeed eachother as one culturally accepted set of signs andsymptoms is replaced by another. According toShowalter, the most recent manifestations of hys-teria in the West are chronic fatigue syndrome,Gulf war syndrome, recovered memory, multiplepersonality disorder, satanic ritual abuse, andalien abduction.

Showalters expanded concept of hysteria isinteresting and suggestive in many ways, espe-cially her attention to the role of modern mediain the rise and fall of the various epidemics shedescribes. But her account of hysteria can also becriticized for being too wide and encompassing.A more conservative analysis would retain whatis special about hysteria and at the same demar-cate it from the putative identity syndrome Ihave described (Merskey 1992, 1995). On thequestion of the media, it is notable that Show-alter never seems to single out the Internet. Thismakes her account and the syndromes she dis-cusses heavily dependent on public media. Thisis quite different from the more private, intimate,personal, and social nature of the identity syn-drome described here. In sum, although Show-alters account of modern hystories is relevantto our topic, the two subjects seem initially quitedifferent and should be kept separate until thereis evidence to show otherwise.

Psychiatry, Autonomy, andIdentity

The evidence reviewed here suggests that psy-chiatric labels can survive and even flourish with-out psychiatry. The examples we have examinedshow that where there exists sufficient consumerinterest and solidarity, psychiatric labels and their

virtual communities can be kept alive onlinethrough the technologies of the Internet. Theseboth validate and reinforce psychiatric diagnosesthat may no longer be considered scientificallyvalid. Thus psychiatric labels may survive amongconsumers although they have been abolished byprofessionals.

The relative independence and persistence ofpsychiatric diagnostic labels despite their abol-ishment by institutional psychiatry raises severalnovel ethical problems. First, because personsoften identify with their label, to remove a labelis to threaten a persons identity. Saying the labelis no longer legitimate, or was a mistake in thefirst place, can therefore cause serious harm,particularly to persons already suffering fromdisorders that implicate identity. Second, the re-tention of psychiatric labels by consumer forcesthat operate independently of the psychiatric es-tablishment can possibly cause further harm topatients if the labels are truly empirically invalid.New, more scientifically appropriate labels maynot be adopted and more effective treatmentsmay not be sought.

Some of the ethical issues identified in thisdiscussion arguably existed before the Internet.But undoubtedly they have acquired a new scopeand dynamic as a result of it. This is new territo-ry for both psychiatry and bioethics. Despitetheir good intentions, web sites that offer con-sumer label survival after official label deathmay prevent sufferers from getting better helpand treatment. There is also the worrisome pos-sibility that sufferers in search of solidarity and avalidated identity may be lured by pro diseasesites quite contrary to the ideals of health andrecovery. In both cases, the potential harms areconsiderable. Not to be forgotten is the possibil-ity that in a context like this the Internet mayitself constitute a harm. Some critics have lik-ened life on the Internet to a Hobbesian state ofnature (Putnam 2000, 173). Doubts have alsobeen raised about whether the Internet mighthinder rather than enhance communication be-cause of its intellectual and verbal orientation(Putnam 2000, 176).

The hypothesis advanced here is that partici-pation in these Internet activities is driven by a

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normal need for identity that has turned into anobsessional craving for identity. Bioethicists andthe relevant health professions need to start pay-ing more attention to these disturbing develop-ments. However, there are important obstacles.One is securing evidence and doing so accordingto acceptable ethical standards of research. Theother problem is autonomy. Unleashed by theInternet, the prospects for autonomy continue toexpand as the boundaries of self-determinationexpand. The examples I have discussed showthat in such a context the search for identity mayslip into a dangerous madness of its own. Mostdisturbing is that we may be ethically powerlessto stop this, because it is under the banner ofautonomy that identity is sought. Ironically, andtragically, autonomy may now be poised to de-vour its young; a new generation of vulnerable,self-determining, psychiatric survivors mad foridentity, sometimes at any price.

AcknowledgmentsI thank the Institute for Advanced Study in

Princeton, New Jersey, for providing me with thefinancial means and an ideal location to writethis paper. Special thanks to all my colleagues inthe Bioethics Group in the School of SocialScience, who provided comments and encour-agement during the preparation of the manu-script. The paper is dedicated to B, who first ledme into this maze.

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A Madness for Identity & Consumer Autonomy