Aprende a Convivir Con El TOC
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A PRENDER A VIVIR CON EL TRASTORNO O BSESIVO- CO M PUL PULS SI V O
Bar bara L. Van Noppen (Asistent Barbara (Asi stente e social), soc ial), Dra. Dra. M ic ichele hele T. T. Pato Pato y Dr. Stev Steven en Rasmu Rasmussen ssen
Diseño e ilustrac iones: Diseño graficdiagonal.com
Septiembr Septi embre e 2001
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Sumario
¡ N o est est am amos os solos solos!! ¡Usted puede hacer algo! ¿Cuáles son las causas del TOC? ¿Tengo yo la culpa? ¿Desapare Desaparecce el TOC? Tratamiento Cuando la persona p ersona con con TOC TO C no lo reconoc reconocee Orientaciones para vivir con el TOC Orientaciones generales Reconocer las señales M odif ica icarr las expec expectativas tativas Sabe aberr que qu e las personas m ejoran a ritm os difere dif erent ntes es No hac h acer er com com parac paracio iones nes entre un día y otro otr o Reconoce conocerr las “ pequeña pequeñas” s” m ejoría ejorías s Crea rearr un am ambi biente ente de apo apoyo yo M antener una com uni unica cación ción clara y sencilla sencilla Atene At enerse rse a un contr con trato ato de cond conducta ucta Fijijar ar lím it ites es,, pero siendo se sensibl nsibl es al estado estado de ánim ánim o de la persona persona Segui guirr con la rut rutina ina fam fam ili ilia ar norm al Recurrir al hum or Apoyar Apo yar el el régim en terapé terapéuti utico co Es im por portante tante pasar pasar un tiem po se separa parados dos Ser flexibles flexib les
Orientaciones para educadores y empresarios Orientac Orient aciones iones espec especiales iales para niños n iños y adolescent adolescentes es Ú lt ltim imas as obs observac ervaciones iones Acerca de los autores Agradecimientos
7 8 11 14 15 23 26 27 28 29 29 30 31 31 32 32
33 33 34 34 34 35 35 37 44 45 46
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¡ N o est est am amos os solos olos!! fin,, después después de varios años sin P or fin saber a dó nde rec saber r ecurr urrir ir,, algu alguien ien le l e ha dado da do un nom nombre. bre. A un m ie iem m bro de su su familia fam ilia le han diagnostic diagno sticado ado un TOC (Trastorno Obsesivo-Compulsivo) y desea des ea sabe saberr tod todoo lo posibl posiblee sobre esta esta enferm edad. Preocup Preocupado ado por p or es esee ser ser querido, sin duda alguna se habrá preguntado, pregun tado, “ ¿Qué puedo hacer hacer para p ara ayudarle?”” Aun que parezca ayudarle? parezca raro, actuar de form a intuitiva no siempre es ben beneficio eficioso. so. Ceder Ceder,, tranqui tranq uililizzarle o discutir no siempre son formas constructivas de contri contribu buir ir a reducir los sínto síntom m as del TOC TO C, ni estas respu respuestas estas tr transm ansmititen en necesariam necesariam ente el deseo de ayudar. Saber que Saber q ue lo que q ue sufre esa esa persona es un tr tras asto torn rnoo cono onocido cido quiz qui zá le suponga un cierto alivio, porqu e “ al m enos sa sabemo bemoss cóm cóm o llam arlo y podemo po demoss encontra encontrarr a algu alguien ien que qu e nos ayu ayude” de” . Saber Saber que esa esa persona persona tiene un TOC es el prim pri m er paso paso para p ara apr aprender ender a afro afront ntar ar mejor m ejor los síntomas. Lleva tiempo y esfuerzo aprender a comprender realmente el TOC, aceptar que un ser querido tiene TOC TOC y saber saber cómo cóm o afrontarlo afron tarlo de form fo rm a eficaz.. Los sínt eficaz síntom om as del TOC no siem siempr pree desaparecen desaparecen pero, con con tratami t ratamiento ento y apoyo apoy o familiar fam iliar,, la mayoría m ayoría de las personas personas exp experim erimentan entan cierta mejoría m ejoría.. Usted Usted puede p uede llegar a aprend aprender er la form a de afro afrontar ntar ese trastorn trastorno; o; las relaciones familiares pueden mejorar y los síntomas, dism di smin inui uirr. No obstante, ob stante, es esos os objetiv ob jetivos os han de alcanz alcanzarse arse gradualmente, sin olvidar que llevan su tiempo.
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Tras vari varios os años trabajando con famil fam ilias ias que tenían tenían uno de sus miembros afectado por un TOC, hemos descubierto des cubierto alguno algunoss aspec aspectos tos comunes: com unes: sentim sentim ientos de aislamiento, frustración, vergüenza, preguntarse “ ¿Por qué q ué no paran quietos?” quietos?” … Sobr Sobree todo es una petición de ayuda: “ ¿Qué debem debem os hacer? hacer?”” . Los Los famililiares fam iares suelen suelen sent sentirirse se angu angustiados, stiados, desconcertados, desconcertados, abrum ados y frustrado fr ustrados. s. Tratando de ayudar, ayudar, es es probable prob able que usted haya probado de d e todo, desde desde pedir a la persona afectada por el TOC que deje de comportarse “ es estúpid túpidamente” amente” , hasta hasta ayudarle ayudarle con con sus rituales o, realizar las tareas que le correspondían a ella para “ m antener la paz paz”” . Cualqu ualquiera iera de es esas as ac actit titud udes es tendr tendráá un efecto efecto negativo en el funcionami ento de su su famili fam iliaa y posiblemente agrave los síntomas obsesivocompul com pulsivos. sivos. Los confli conflictos ctos fam famili iliare aress son inevitables inevit ables.. A m edida que q ue la persona p ersona con TOC recha rechazza sus intentos intento s de “ ayudarle” o éstos éstos result resultan an ineficace ineficaces, s, usted puede senti se ntirse rse dese desespe sperado rado o im pot potente. ente.
¡Usted puede hacer algo!
U na muj m ujer er de 40 años, qu quee llevaba 20 sufriendo un TOC grave, y su madre de 60 años, empezaron a participar en un grupo de psicoeducación familiar. Según explicaron, explica ron, “ tení tenían an una relac relación ión m uy buena y podían hablar de todo except exce ptoo del TOC” TOC” . En En la l a tercera tercera sesión sesión anun anunciaron ciaron con júbi lo al grupo que ya “ incluso podían podían hablar abiertam ente sobr sobr e el el TOC” TOC” . Cuando Cuando los dem ás les preguntaron qué había cambiado, la mujer afectada respond res pond ió:” M i m adre ha venido venido a las las reunio reunio nes del grupo gru po,, ha leído leído in infor form m ac ación ión sobre el TOC TOC y ha escucha escuchado do a otras otr as person personas as afectadas habl hablar ar sobre sobr e sus sus experiencias. experi encias. 8
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Creo que q ue está está empez em pezando ando a com pr prender ender este este tras tr asto torno rno y todo lo l o que yo es estoy pasando” pasando” . Hemos observado que el aprendizaje y la comprens comp rensión ión emocional em ocional de lo que supone supone experim experim entar loss sínto lo síntom m as del TOC deben acompañar acom pañar a los lo s esfuerz esfuerzos os de la familia fami lia por intervenir. Com omoo m ucha uchass personas personas que padece pade cenn un u n TOC son, por otr otroo lado, l ado, muy mu y funcionales f uncionales,, no sorprende sorp rende que tienda usted usted a ver las com compul pulsiones siones comoo conductas com cond uctas qu quee la person personaa puede em em pez pezar ar o detener cuando quiera. Ese es un error habitual. Aceptar la realid rea lidaad de que su fam fam ili iliar ar tiene tiene algo algo que qu e “ no funciona fun ciona bien” y pr ec ecisa isa ate atención nción prof p rof es esion ional, al, puede ser ser un proceso doloroso. Antes de poder prestar una ayuda eficaz,, es nece eficaz necesa saririoo rec r econo onoce cerr el TOC e infor inf orm m arse sob sobre re él. Debe Debe con conocer ocer cuál es el prob pr oblem lem a ant antes es de intent in tentar ar solucionarlo solucio narlo.. El El aprendiz aprendi zaje es el prim pri m er paso. paso. A medida m edida que vaya aprendi aprendiendo endo m ás sobre el trastorno, trastorn o, empez emp ezará ará usted a albergar es esperanz peranzas as de poder hace hacerr algo para ayudar ayu dar a la person per sonaa afectada por po r el TOC TOC.. El El TOC es un trastornoo bioquím trastorn bio químico ico con con sínto síntom m as clí clínicos nicos que van van más m ás allá de los lo s rasgos rasgos de personalid person alidad. ad. Cuánto Cuánto m ás se sepa, pa, m ejor podr p odráá considerar considerar las cond conductas uctas irr irrac acion ionale aless desde desde una perspectiva impersonal. Las relaciones familiares m ejorarán y la persona con TOC se se sent ntiriráá más m ás apoyada. Unas Un as relaciones fam fam ililiares iares po positi sitivas vas y el hecho hecho de sent sentirirse se comprendido potencian considerablemente los beneficioss terapéut beneficio terapéuticos icos (medica (medi cación, ción, terapia de conducta). Ya sabemos cómo llamarlo... ¿Pero cómo saber cuándo los síntomas obsesivo-compulsivos precisan atención ate nción profesional? pr ofesional? Segúnn empi Segú em piec ecee a saber saber más m ás sob sobre re el TOC, TOC, es es posibl posi blee que piense piense “ ¡P ¡Paarec recee que habla hablann de mí!” m í!” o “ ¡E ¡Eso so es es justo justo lo que q ue yo hago!” hago! ” . Com Compara pararr los l os rasgos rasgos de la persona personalidad lidad 9
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con los síntom síntom as es un error habitual, porque a prim era vista vi sta parecen parecen lo m ism ismo. o. No ob obstante, stante, las las causa causass de esa esa conducta son son m uy diferentes diferentes.. Por Por eje ejem m plo plo,, un padre p adre a quien le costaba entender por qué su hijo no podía “ parar” de lavarse lavarse y m arc archars harsee a trabaja trabajarr, le dijo que q ue él él también tenía tenía el el “ hábito” de lavars lavarsee y que, si él podía parar, ¿por qué no podía su hijo?, lo cual enfureció al hijo, hij o, agudizándole agudizándole lo s síntom síntom as as.. Se Se sintió fru frustra strado do porque porq ue su su padre no ente entendía ndía la im portante distinción entre un hábito y una un a com pulsión. Es import im portante ante distinguir distingui r entre los l os rasgos rasgos obsesivoobsesivocompulsivos comp ulsivos y l os síntom síntom as obse obsesivo-c sivo-com om pulsivos. Según una serie de estudios realizados, casi todo el m und undoo tiene ti ene uno o dos d os rituale ritu ales. s. La dif difere erencia ncia reside reside en en el grado de ansiedad ansiedad y convicc conv icción ión de la neces necesidad idad de de realizar realiz ar la com pu pulsió lsión. n. Las person personas as con TOC sienten que no puede puedenn controlar control ar su su ansiedad ansiedad de otra form a que no se seaa llevando a cabo cabo las com com pu pulsion lsiones es.. Sus Sus cerebr cerebros os les dicen que si realizan los rituales, sus miedos disminu dism inuirán. irán. Es Es mejor m ejor rec rechaz hazar ar o identi identificar ficar esa esa cond conducta ucta c o m o u n “ s í n t o m a ” , no n o co c o m o “ f al a l l o s” s ” . To d o s practicam practica m os uno o dos d os rituales rit uales,, pero las cond conductas uctas se convierte onviertenn en en “ síntom as as”” de un trastorno trastorno si “ no son son deseadas dese adas”” e interf ieren en las l as relaciones sociales sociales o laborales labor ales.. Cuando un unaa persona persona no puede p uede con contro trolar lar las compulsiones comp ulsiones,, es es import im portante ante no culparla. Por otro lado, el TOC TOC no debería con converti vertirse rse en en excusa para reducir la funcionalid fun cionalidad. ad. Por Por otr otroo lado, l ado, una vez ident identifi ifica cado do el TOC TOC, el afectado espera que los familiares asuman sus responsabilidades y así poder evitar determinadas situaciones, lo que rara vez les sirve de ayuda.
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¿Cuáles son las causas del TOC? ¿Tengo yo la culpa?
A lgun lgunos os familiares fami liares se han preguntado, “ S i t e n g o r a sg s g o s s u b cl c l í n i c o s, s, ¿desa desarr rroll ollaré aré es esee trastorno? trastorn o?”” . No hay pruebas que respalden ese vínculo. De hecho, muchas personas tienen rasgos ras gos obsesivo-c obsesivo-com ompul pulsivos sivos durante todaa su tod su vida vi da y no llegan l legan a desa desarro rrollar llar un TOC. TOC. Tanto Tanto lo loss facto factores res am am bi bientales entales comoo genéticos pare com parece cenn contribuir contri buir a la aparición aparición de los síntom as obses obsesivo ivo-compulsivos. Los últimos estudios genéticos, junto con un análisis de anomalías neurobioquímicas en personas con TOC, indican que este trastorno puede tener un cierto componente genético. Así, varios m iemb iembros ros de una gran fam ilia pueden estar estar afecta afectados dos por un TOC u otros trastornos relacionados, como el síndr sí ndrom omee de la Tour ourette ette (ST (ST). ). Los miemb mi embros ros de la famili fam iliaa pueden presentar diversos síntomas, obsesiones y compu com pulsion lsiones es,, ansiedad ansiedad generalizada, generalizada, crisis de angustia angusti a y tics complejos motores o vocálicos (síndrome de la Tour ourette). ette). Se Según gún lo loss estudi estudios os genéticos, exi existe ste un índice índi ce de concordancia más elevado de TOC en gemelos monocigóticos (cerca del 65 %) que en gemelos bicigóticos (alrededor del 15 %). Hasta la fecha no se han realiz realizado ado estud estudios ios sobre hijos hijo s adop adoptiv tivos os o gemelos que hayan crecido separados. Parece ser que las personas afectadas por un TOC presentan una vulnera vul nerabili bilidad dad genética genética que se se ve influida influ ida por situac situaciones iones de estr estrés és y fac f actor tores es amb ambientales, ientales, ori origin ginando ando la l a aparición aparición de sínto síntom m as as..
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tam bién participen ot ros neurotr ans también ansm m isores isores.. En En otras ot ras inves inv estitigac gacion iones es se ha sugerido la alteració alteraciónn de algunas algun as region regi ones es es especí pecífifica cass del cerebr cerebroo com o causant causantes es de los lo s síntomas obsesivo-compulsivos. Dichas regiones del cerebro son muy ricas en receptores de serotonina y están es tán asociadas al al aprendi apr endizzaje de proces pro cesos os y a conductas cond uctas de aproxim aproxi m ac ación ión/huida. /huida. Tamb También ién se han identificado id entificado trastornos similares al TOC en el reino animal. Por ejem eje m plo plo,, existe existe un tras tr astor torno no consistente consistente en lim piarse y lamerse lam erse en exceso exceso que qu e puede afectar afectar a perros, perr os, gatos o incluso inclu so pájaros. Dicho trastorno trastor no pro p roduce duce caí caída da del pelo o de las plumas por lamerse o escarbarse con el pico en exceso, de forma compulsiva. Los daños en la piel pueden causar infección y, en casos extremos, poner en pelig peligro ro la l a vida del del anim al. Por fort f ortuna, una, los anim anim ale aless afectados responden a los mismos medicamentos utililizzados para tratar uti tr atar el TOC, TOC, que actúan a través tr avés de un m eca canismo nismo se serotoni rotoninérgic nérgico. o. Pes esee a que m uchas inv es estitigaciones gaciones científica científi cass se han centr centrado ado en factores biológi biol ógicos cos,, existe existe una un a extensa extensa literatura publicada sobre el modelo teórico de aprendizzaje del TOC. aprendi TOC. El El m od odelo elo m ás po popul pular ar se basa basa en en la teoría de dos fases fases de Mow M ow rer para la adquisición y el mantenim m antenim iento de actitu actitudes des de miedo m iedo y recha rechazzo. En En la primera fase de la adquisición, objetos neutrales (retretes,, tijeras (retretes tij eras), ), pensami pensamientos entos (“ algui alguien en se va a hace hacerr daño” ) o im áge ágenes nes (e (ell dem oni o) se s e as asocian ocian a m iedo/ans iedo/ansiedad, iedad, a tr travé avéss de su su relac r elació iónn con un u n estím estím ulo de aversión que prod pr oduce uce males m alestar tar.. En En la l a segund segundaa fase, fase, o de mantenimiento, se refuerza el rechazo de los desencadenantes (situaciones, objetos) ya que así disminuye la ansiedad. Esta explicación es demasiado simplista. Además, los desencadenantes internos
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muchas personas afectadas por el TOC describen compulsiones mentales, como contar, analizar una conversación conversa ción o comprob comp robar ar una habitac habitación ión m entalm entalmente ente.. Los m odelos cognit cognitivos ivos complementan compl ementan los modelos de conducta condu cta o aprendiz aprendi zaje, abord abordando ando el proce pro ceso so cogn cognititiv ivoo típicamente alterado en el TOC. Pese a que estos pensam pensa m iento ientoss tan mol m oles estos tos para las personas con TOC son comunes com unes para la mayoría m ayoría de nosotros, nosotr os, esa esass personas experim enta entann un m ale alesta starr excesivo, excesivo, por m iedo a que suceda una catástrofe, y les resulta más difícil rechazar esee tipo de pensam es pensam ientos. Los Los inves inv estig tigadores adores del del campo camp o cognitivo están estudiando los fenómenos cognitivos (creencias, memoria, procesamiento de la información, actit ac titudes, udes, perce percepciones) pciones) para para distingu di stinguirir los proces p rocesos os de razonamiento obsesivo-compulsivo de las formas comunes com unes de pensa pensam m iento. Es impor im portante tante reconocer que el el TOC no es “ culpa” de la persona afecta afectada. da. Igualm Igualm ente, usted, com comoo famil fam iliar, iar, ha de saber que q ue no es el el causante causant e del TOC; TOC; éste éste no está origin ori ginado ado por una u na determ determ inada educac educación ión.. Los Los padres quee suf qu sufren ren un u n TOC tem temen en enseñar enseñar a sus hijos hij os a tener los síntomas síntomas.. Un padre que no para para de “ lava lavarse rse”” puede tenerr un hijo que tene q ue no para de “ comp comprobar robar cosa cosas” s” . Aunqu Aunquee la genética parece desempeñar un papel en el TOC y los hijos hij os im itan a los padres, padres, no es posibl posiblee aprender aprender la ansiedad que acompaña al TOC de los padres. Quizá sea humano sentirse responsable de los fenómenos fenóm enos psicológi psicológicos cos que no tiene ti enenn una u na expl explica icación ción única y clara. Es posible que se pregunte a sí mismo: “ Bien, si yo no he sid sido, o, ¿cuál ¿cuál es es la ca causa? usa?”” . Actu Actualm almente, ente, la mejor explicación general es la siguiente: una predisposición genética en la que muy probablemente
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personales pueden personales pueden contribu contr ibuir ir a ello ello,, pero los padres no causan ca usan el TOC TOC. Tod odos os podem po demos os sent sentirirno noss culp culpables ables por la forma en que hemos educado a nuestros hijos o hemos respondido a nuestro cónyuge. Culpar a los familiares no conduce a nada. Por el contrario, éstos pueden aprender a participar eficazmente en el tratamiento tratam iento del TOC TOC y a desem desem peñar un papel crucial facilitando mejoras funcionales y no favoreciendo la persistencia de los síntomas. Usted, como familiar, puede aprender conductas de apoyo que le alejen de las comp compulsiones ulsiones e inf influi luirr en la evolu evolución ción de los síntom síntomas as de la persona perso na con TOC y en su vid v ida. a.
¿Desaparece el TOC? m ayoría ía de las personas con con TO TOC C La mayor tienen altibajos. Si espera que, una vez desaparecidos los síntomas obsesivo-compulsivos, ya no reaparezcan, posiblemente se sienta decepcionado. Hay personas que sufren un episodio y después no vuelven a manifestar los síntomas durante dur ante el el res r esto to de su su vida. v ida. Con Con tod todo, o, lo mejor es estar preparado para la aparición de los síntomas en m om entos de estrés estrés o de d e camb cambio, io, y ayudar a que la persona afectada también lo prevea. Son varios los factores que pueden infl i nflui uirr en los l os altibajos altib ajos del TOC TOC. El El m ás com común ún es el el estrés, estrés, qu quee puede aflo aflorar rar en muchas m uchas situaciones, incluso en momentos felices o positivos. Las personas con TOC suelen comentar que no les
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ayudar a llevar llevar una “ vida norma norm al” . Com Comoo familiar fami liar,, usted usted puede aprender a prever y a reaccionar ante esos altibajos.
Tratamiento
Los especia especialilistas stas coincid coinciden en en que qu e lo mejor m ejor es es un tratamiento combinado com binado que incluya in cluya m edic edicac ación, ión, t era erapia pia de conducta y formación y apoyo a los familiares. Son varios los medicamentos que tienen un efecto beneficioso benefi cioso en las l as person personas as con TOC, TOC, com o la clom clom iprami ipramina na,, fluvoxamina, sertralina, fluoxetina y paroxetina. Todo odoss ell ellos os producen pro ducen cam cam bio bioss en en el sistema cerebral de la serotonina. Algunos también se comercializan como antidepresivos, lo cual es positivo, pues muchas personas con TOC presentan además síntomas de depresión, entre otros, pérdida de interés y energía, dificultad para concentr conce ntrarse arse y dorm do rm ir, inclu incluso so ideas ideas suicid suicidas as.. No siempre siemp re está es tá claro si estos síntom as son son se secund cundari arios os al TOC; TOC; es es decir, si la depresión se produce como respuesta a la necesidad nece sidad de conviv conv ivir ir con el TOC, TOC, o si se trata de un a enfermedad diferente (depresión primaria).
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la mayoría m ayoría de los casos casos parece parece se serr que q ue los medica m edicam m entos están es tán pensados pensados sólo sólo para contr controlar olar,, y no para “ cura curar” r” , los síntom as as.. De De nuevo, contr ariam ariamente ente a la cree creencia ncia popular, los medicamentos por sí mismos rara vez elim inan por po r com pleto los l os sínto síntom m as del TOC TOC. Cuando Cuando son eficaces, la mayoría de las personas con TOC aseguran que les ayudan a olvidarse de las preocupac pr eocupacio iones nes y resistirse resistir se a las com compul pulsiones siones con con m ás facilidad. Por tanto, la persona con TOC tiene que esforzarse algo para controlar los síntomas, pero la m edica edicación ción puede p uede contr contribu ibuirir a facili facilitar tar el proce pr oceso. so. Cuando Cuando se deja de tom ar ésta, ésta, los sínt síntom om as pu pueden eden reaparecer reaparecer en unas semanas, y la persona afectada tiene más difificultades di cultades para resistir resistirse se a las com compul pulsiones. siones. La adición de otras form as de tratamiento tratam iento,, espec especialm ialmente ente la terapia de conducta, condu cta, perm ititee alb albergar ergar la l a espera esperanz nzaa de reducir o interrumpir la medicación a largo plazo. La terapi terapiaa de con condu ducta cta es m ás eficaz qu quee la terapia terapi a psicodinám psicodi námica ica tr tradicional. adicional. A difere dif erencia ncia de la psicoterapia, que suele hurgar hurg ar en el pasado pasado para encont encontrar rar las l as “ raíc raíces es”” del problema, la terapia de conducta adopta una perspectiva perspe ctiva práctica práctica (solucion (soluciones es “ aquí y ahora” ) para elim inar las cond conductas uctas no deseada deseadas. s. Se Se recom recom ienda elaborar, en primer lugar, una jerarquía o lista de las situaciones, objetos (desencadenantes externos) y pensam pensa m iento ientos, s, imáge im ágenes nes e impul im pulsos sos (dese (desencade ncadenantes nantes internos) int ernos) temidos/e temi dos/evi vitados tados que produ pr oduce cenn angustia. angu stia. Cada Cada
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A continu cont inuac ación ión,, hay que anim ar a esa esa persona para para que consiga resistirse a las compulsiones que siente necesidad nece sidad de llevar ll evar a cabo cabo por po r temo t emorr a las conse consecue cuencias ncias o a una mayor ansiedad. Esta parte es la llamada prevención de la respuesta. A medida que se practica la exposición y la l a prevención de d e la respuesta respuesta,, la persona afecta afe ctada da se se da cue cuenta nta de que “ no ocurre o curre nada malo” cuando opone resistencia a los rituales. Al principio siente ansiedad por un miedo irracional a que se produzca una catástrofe. Con el tiempo, es capaz de decirse a sí sí mism mi sma: a: “ Bien, sólo m e he lavado una un a vez vez y no m e ha pasa pasado do nada n ada m alo” . Si, Si, cuando cuando no n o hace ca caso so a las compulsiones, tiene la sensación de que le falta algo o de “ no encontr encontr ars arsee bien” , la exposición exposición a situaciones situacion es “ dese desencade ncadenantes” nantes” y la resistencia resistencia a lo loss rituales rit uales consigue tam tam bién que ese ese malestar malestar disminu dism inuya ya con el el tiempo. tiem po. La exposició exposiciónn y la prevenc pr evenció iónn de d e la respuesta respuesta suelen suelen provocar pro vocar un aumento aum ento inicial in icial de la ans ansiedad; iedad; no obsta ob stante, nte, a medida m edida que qu e se se opone opon e resistencia resistencia a las com com pul pulsiones, siones, con el el tiemp ti empoo e insistencia insistencia se se pro produce duce una disminu dism inución ción apreciable del malestar y una mayor capacidad para resistirse a los rituales. ri tuales. No desespere desespere:: con la repe r epetitición ción y con pro p rolon longados gados períodos de práctica, la ansiedad ansiedad se reduce. Es lo que se llama habituación. La terapia de conducta condu cta exi exige ge mucha m ucha práctica y paciencia, paciencia, adem además ás de una intens int ensaa motiv mo tivac ación ión para tolerar niveles ni veles crec crecientes ientes
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terapia de conducta, el el aum ento inicial i nicial de la l a ansieda ansiedadd suele sue le achac achacars arsee a la posibilidad posibil idad “ de estar estar haciendo haciendo algo mal, porque se supone que tenía que hacerme sentir m ejor” , en lugar de “ es esta ta ansieda ansiedadd es una buena seña señall de que me m e estoy estoy enfrentando enfr entando a cosas cosas que me angustian, angusti an, por lo que es es normal que al al princ prin cipio m e sienta sienta peor” . Muy a menudo se abandona la terapia de conducta como consecuencia de ese aumento inicial de la ansiedad, ans iedad, olvidando olvid ando que qu e el el proce pr oceso so de habit habituac uación ión exige su tiempo. tiempo . Com Com para parado do con el tiempo ti empo que una persona persona lleva padeciendo los l os sínto síntom m as del TOC, TOC, el el uso u so continuado conti nuado de la exposición exposición y la l a prevención prevención de respuesta respuesta perm permite ite reducir la angustia y las compulsiones con bastante rapidez rapi dez.. Con Con to todo do,, la mayor m ayoría ía de las personas esperan, esperan, de form for m a poco realista, que sus pr prob oblem lemas as desa desaparez parezca cann con más rapidez. Incluso después de haber dejado de actuar compulsivamente, esas preocupaciones permane perm anece cerán rán porqu po rquee las cond conductas uctas ca cam m bian antes que los pensam pensam iento ientoss y los senti sentim m iento ientos. s. Entend ntender er todo esto le ayudará a ser, como persona de apoyo, un mejor entrenador. La intervención de la familia es un importante complemento comp lemento de la medicación medicación y la terapia de condu conducta cta.. El grupo de apoyo psicoeducativo multifamiliar ha demostr dem ostrado ado ser una estr estrategia ategia eficaz eficaz. Dicho Dicho gru g rupo po está formado por familiares y personas con TOC que se reúnen para p ara aprend aprender er sobre el tras tr astor torno, no, sus efec efectos tos en
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adecuada adecua da de los fami f amililiare aress puede ayud ayudar ar a abor abordar dar esos esos problem pro blemas as,, y facili facilitar tar la recuperac recuperación ión.. Los grupos de apoyo psicoeducativos multifamiliares son singulares porque brindan la oportu opo rtunid nidad ad poco habitual h abitual a todas to das las las personas personas afec afectadas tadas de sent sentirirse se m enos aisladas y raras r aras.. Se Se trata de un pr proces ocesoo capacitador basado en el aprendizaje sobre el TOC, el interc int ercamb ambio io de experiencias experiencias sim simililare aress y el análisis análisis de form for m as dif difere erentes ntes de resolver los lo s problemas. probl emas. Usted se sentirá aliviado al saber que hay otras personas que luchan contra los mismos miedos, preocupaciones, preguntas y conflictos relacionados con el TOC. Los grupos de apoyo psicoeducativos m ulti ultifami familiares liares puede puedenn estar estar dirigido diri gidoss por profes prof esionales ionales o bas b asarse arse en prin pr incipi cipios os de autoayuda. autoayud a. Si está está usted a punto de form ar un grupo gr upo com o ese ese por su cuenta, cuenta, es recomendable que consulte con profesionales para obtener información médica adecuada. Además, las famili fam ilias as pueden aprender aprender por p or sí solas viendo cintas de vídeo y leye l eyendo ndo publ publica icaciones ciones.. Otro enfoque enfoque multifam m ultifamiliar iliar que incorpora a fam fam iliares y otras ot ras personas personas de apoyo es el el tratami t ratamiento ento de conducta multifamiliar (TCMF). Consta de 6-7 familias e incluye a la persona con TOC. Se celebra una reunión privada con cada cada unidad uni dad famil fam iliar iar en dos ocasio ocasiones nes antes de que
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en la exposición directa y la prevención de respuesta, con deberes para para casa casa y ejercicios de autocontro autocont roll entre entr e las suces sucesiv ivas as se sesion siones es.. Además Adem ás,, las fam famililias ias observan los ejercicios ejercicios de exposición y de d e prevención prevención de respuesta respuesta,, compart com parten en las experiencias y estrategias estrategias de resolució resoluciónn de problem prob lemas as con otras otr as fam famili ilias as,, y aprenden a negociar negociar acuerdos sobre la mejor forma de responder a las demandas dem andas del del TOC. TOC. Dichos acuerdos acuerdos se llaman llam an contratos contr atos de cond conducta ucta fam fam ili iliare ares. s. El objetivo principal del contrato de conducta consiste cons iste en en consegui conseguirr la l a colabor colaborac ación ión de los famili fam iliare aress para el el diseño de plane pl aness espe especí cífificos cos sobr sobree la form for m a de controlar contro lar los lo s síntom síntom as obses obsesiv ivo-c o-com om pul pulsivos sivos desde desde el el punto pun to de vista de la conducta. condu cta. Esa colabor colaborac ació iónn reduce r educe los conflictos y m antiene la unidad famil f amiliar iar.. Con Con una m ejor com unica unicacción y una ma m ayor comprens comprensión ión de los puntos de vista de los demás, es más fácil que los famili fam iliare aress ayud ayuden en a la persona a contr controlar olar sus sínto síntom m as obsesivo-compulsivos, en lugar de posibilitarlos. La experiencia experienc ia ha demostrado dem ostrado que q ue la terapia de cond conducta ucta familiar más eficaz se basa en las negociaciones
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m ientr ientras as realiz realizaa la tarea, tarea, 2) 2) acord acordando ando que q ue los fami f amililiare aress sólo le l e tranquili tranqui lizzarán una vez di diciéndol ciéndolee que, en reali realidad, dad, la ropa no es está tá cont contami aminada nada,, o 3) 3) dándo dándole le algú algúnn tipo ti po de compensac com pensació iónn una un a vez alca alcanz nzado ado el objeti ob jetivo vo (c (cenar enar fuera, muchos elogios) como refuerzo positivo. Un ejem eje m plo de cóm cóm o funciona fu ncionann los lo s contratos contratos de conducta conducta familiares es el caso de un hombre de 35 años con compulsión acumulativa. Guardaba ropa de su adoles adol esce cencia ncia que qu e no se había pu pues esto to en 20 años. Pri Prim m ero fue su armario el que llenó hasta arriba, pero luego empezó a llenar de cosas su dormitorio y otras habitaciones,, hasta habitaciones hasta el punto punt o de d e result resultar ar insopor table. Este hom bre y su m ujer acordaron acordaron que todos todo s los días días durante dur ante un m es titiraría raría una prenda pr enda de su su armario. arm ario. Pues Puesto to que a las personas con con tendencia a acum acum ul ular ar cosas cosas les resulta difícil di fícil des d espr prenderse enderse de algo, fue fu e neces necesario ario pon poner er lím itites es.. Si Si antes ant es de las 20:0 20:000 h no había h abía entr entregado egado a su m ujer una prenda, ella tenía tenía perm permiso iso para ir al arm arm ario y elegir elegi r 3 artículos artículo s de los que qu e él él seleccion seleccionaría aría un uno. o. Si antes de las 20 20:3 :300 h aún no n o había h abía elegid elegidoo la l a prenda, prend a, lo haría ella en su lugar. De esta forma, la familia anima firmemente a la persona con TOC, pero haciéndola
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negarse a contri negarse contribui buirr o participar parti cipar en en rituales ri tuales y reducir la conducta cond ucta evasiv evasivaa todo tod o lo l o posib p osible. le. Tras Tras 20 20 año añoss de ayu ayudar dar a su mujer mu jer “ para m ante antener ner la paz paz” , el marido llegó a su su casa ca sa y dejó de “ ayudarla” con sus com compul pulssion iones es.. Es Es de imaginar im aginar la ira que eso eso provocó provo có en en su mujer m ujer,, y el el m arido regresóó a su antiguo regres antig uo es estil tilo, o, para sentirse sentirse nuevamente desconc des concerta ertado, do, enfadado, mal m al inform inf orm ado, engañado engañado e im po potent tente. e. El marid m aridoo se había llllevado evado a cas casaa el el mensa m ensaje je correcto de la primera reunión; el error residía en la form fo rm a de po ponerl nerloo en prác pr áctitica ca.. Las Las person personas as qu quee se se han visto “ pres presionadas ionadas”” has hasta ta el el extremo de cerra cerrarr la llave de paso general del d el agua de la casa casa para evi evitar tar el lavado l avado com ompulsivo, pulsivo, o de quitar interruptores o pom os para para que no se comprueben, han comprobado con frecuencia que el el hecho hecho de interrum pir la l a com compulsión pulsión para p ara term terminar inar con ella suele suele provocar pro vocar intens int ensos os conflictos confli ctos fam fam ili iliare ares, s, que a m enudo son tan tan dolo rosos com o vivir vivi r con los sínto sí ntom m as obses obsesivo ivo-c -com ompul pulsivos. sivos. Así Así,, lo m ás im impor portante tante es que, antes de que intervengan los familiares, la persona afectada afectada y los famil fam iliares iares deben deben disc di scuti utir, r, nego negociar ciar y acordar un u n plan p lan de acció acción. n. Para Para que funcione fun cione la terapia de conducta cond ucta famil fam iliar iar,, este este pro p roce ceso so es esencial. esencial. La única
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Cuando la persona con TOC no lo reconoce
He
recibido llamadas y cartas describiendo describi endo lo l o que qu e quizá se seaa la peor situación: cuando los familiares reconocen los l os síntom as del TOC TOC, pero la persona person a afectada afectada no y rechaz rechazaa toda tod a ayuda. Lo ideal no siempre coincide con la realidad. Es Es posible posibl e que alg alguno unoss de ustedes ustedes tengan tengan un fami f amiliar liar que qu e se niega de plano a someterse a un tratamiento o, incluso, que niega la existencia de los síntomas de un trastorno.. Se trastorno Se trata de situ situac acion iones es m uy duras que producen desesperación. Quizáá no tenga Quiz t enga otra otr a alt alternativa ernativa que qu e seguir seguir adela adelante nte con su vida, vid a, m ientr ientras as rec recuerda uerda periódica periód icam m ente a la persona afectada qu quee está está dispues dispu esta ta a ayud ayudarle, arle, que com com pr prende ende su vergüenza y angustia y que sus síntomas de TOC pueden mejorar. En general, las personas con TOC no pueden empezar una medicación o una terapia de
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El prim p rim er paso paso consiste en en que qu e el el padre p adre o la madre m adre y la l a persona afectada reconozca reconozca el el TOC. TOC. A contin cont inuación uación,, es importante informarse todo lo posible sobre este trastorno. Además, Ad emás, pueden participar en grupos gr upos de apoyo del TOC, inscribirse en ATOC, leer el Boletín del TO TOC C y, quizzá, contac qui contactar tar con otra ot ra familia fami lia en la m ism ismaa situ situac ación ión (a través de ATOC). Es muy mu y im por portante tante hablar hablar con otros otr os familiares fami liares para para compartir com partir los senti sentim m ientos de ira, tristeza, tristeza, culpa, vergüenza vergüenza y ais aislam lamiento. iento. El El hec hecho ho de comentar com entar con otras fam fam ili ilias as el método m étodo que qu e em em plean para para afro afrontar ntar loss síntom lo síntom as y cóm o deben afrontar afro ntar en su caso caso el TOC TOC les perm perm iti itirá rá reflexionar con m ás criterio sus respue respuesta stass y ofrecer alternativas. En general, usted debería: 11)
Tene nerr en ca casa publica publicaccione ioness, cinta cintass de víde vídeoo y case ca setes tes sobre el TOC. TOC. Ofrecer Ofrecer es esaa infor inf orm m ac ació iónn a la la persona o dejarla a la vista (estratégicamente situada) para que pueda consultarla cuando esté sola.
22)
Recomenda omendarr a la pe pers rsona ona que querida rida que es bue bueno no para ella ella que usted se inv involu olucre cre lo menos m enos posible en en las l as conductas cond uctas que siente sient e necesa necesaririas as.. Usted está para
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Si la persona sigue negándose negándo se a recon reconocer ocer que algo va mal, m al, puede usted usted adop adoptar tar medidas m edidas defini definitiv tivas as,, entree las que se in entr incluy cluyen: en: 11)
Siga ayudá yudándole ndole y, cua cuando ndo se sea pos posible ible,, obte obtenga nga ases as esoram oramiento/ayuda iento/ayuda profes pro fesion ional al de alguna algun a persona expert exp ertaa en el TOC. TOC.
22)
No se se involuc involucre re en en el el TOC TOC: no inte intente tra tranquiliz nquilizaar a la persona, persona, no perm ita que qu e se se lave las manos m ás vecess de lo nor vece n orm m al, com com pr pruebe uebe cosas cosas sin cesar cesar,, o evite evit e determinadas determ inadas situaciones. situaciones. El hec h echo ho de d e que no participe parti cipe en en los l os rituales rit uales puede aumentar aum entar la hostilidad hostil idad de d e la persona persona afectada afectada por se senti ntirse rse
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es algo fund f undamental, amental, lo que a veces veces exige hablar con otros otr os famili fam iliare aress para uni unificar ficar la estrategia, estrategia, puesto puesto que, q ue, de otro m odo, sus buenas buenas intenciones podrían debilitars debilit arse. e. Por eje ejem m plo plo,, una madre m adre dejó de hacer hacer la l a colada colada de su hijo hi jo de d e 28 28 años, años, pero empez em pezóó a hacerla hacerla su su marid m aridoo porq po rque ue no habí h abían an pactado pactado un plan p lan para afro afrontar ntar los lo s síntom síntom as del TOC. En casos casos muy m uy gr graves, aves, la persona person a afectada afectada por el TOC TO C pu puede ede optar fin f inalm almente ente por ir irse se de casa casa.. Si Si no n o es m enor de edad, edad, vive solo y no constituye un peligro peligr o para sí sí mism m ismoo o para los demás dem ás,, es es posible posibl e que usted no pueda p ueda hace hacerr m ucho para que busque ayud ayuda, a, lo que q ue no signifi sign ifica ca que usted deje de ayud ayudarle arle o al al m enos de intentarlo. int entarlo. A vece vecess es cue cuestión stión de perseverar perseverar durante du rante años. De nu nuevo, evo, recuerde recuerd e que aprender aprend er a aceptar aceptar el TO TOC C
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fru stración frustrac ión y des d eses esperac peración ión,, pues los sínto síntom m as del TOC TOC parecen aumentar. La tendencia natural a ignorar las señales de advertencia del TOC TOC parec parecee que demo d emora ra la búsqueda b úsqueda de ayuda ayud a profesional. pro fesional. Cuanto Cuanto m ás se se sabe sabe sobre sobr e el TOC TOC, m ás opt optim im ista se se puede ser ser sobr sobree el el tratamiento tratam iento y la la recuperación. En un u n esfuerzo esfuerzo por p or ayudar a otras ot ras familias, famil ias, algun algunas as personas afectadas afectadas por el TOC TOC y sus famili fam iliares ares,, buenos bueno s conocedores de la dificultad de abordar abord ar este este pro problem blem a de prim era m ano, han han elaborado la sigu siguiente iente lista.
Orientac Orient aciones iones generales 1
. Aprender Aprender a rec reconoce onocerr las las seña eñales les indica indicativas tivas de que una persona tiene blem
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(1)1
Reconocer las señales
La prim era orientac orientación ión diri dirigida gida a los fam fam iliares insiste in siste en en la l a neces necesid idad ad de que qu e éstos éstos reconoz recono zca cann las l as “ se señales ñales de adv advertencia” ertencia” del TOC. TOC. A veces, veces, las personas afectadas afec tadas por es este te trastorno tienen pensamientos pensami entos que usted desconoce desconoce y que form fo rm an parte del TOC TOC, por lo lo que hay que qu e vigilar vigi lar los lo s camb cambio ioss de cond conducta. ucta. La lista de 12 señales señales que se muestra m uestra más m ás adelante adelante no es es,, en en m od odoo alguno, exhaustiva. exhaustiva. No ignor i gnoree algun algunos os cambi cambios os significativos significa tivos atribuyéndolos atribuy éndolos a “ ras rasgos gos de su su personalidad” personalid ad” . Rec Recuerde uerde que los lo s camb cambios ios pueden pu eden ser ser graduales, pero en general diferentes del modo m odo en que la persona se ha compor com portado tado en el pas pasado. ado. Cuando Cuando se pidee a las fam pid fam ili ilias as que hagan una u na lista de las nu nueva evass
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necesidad neces idad de reafirm ac ación ión.. 4 . Dedic dicaar má m ás tie tiem m po de lo norma norm al a tare tareaas senc ncilla illass. 5 . Retra trasso pe perma rmane nent ntee. 6 . Exc xceesiva pre preoc ocupa upacción por nim ie ieda dade dess y deta detalles lles.. 7 . Reac accione cioness emocionale emocionaless extre extrem m as ante cos cosas as sin importancia. 8 . Inc ncaapa paccida idadd de do dormir rmir bie bien. 9 . Que Quedars darsee leva levantado ntado hasta hasta tarde acabando de ha hace cerr cosas 1 0 . Cam bio im i m portante en en los hábitos alim alim enta entarios. rios. 1 1 . Considerar la vida vid a diaria una lucha. 1 2 . Condu onducta ctass de evit evitac ación ión.. (2)2
Mod Mo dificar la las expecta tati tiv vas
Cas asii to todas das las personas con TOC expl explican ican que q ue
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referencia al referencia al prop pr opio io nivel n ivel funcion fu ncional, al, no al de otros. otr os. Es convenientee anim ar a la person convenient personaa para para que se se “ fuerce” a sí sí misma mism a todo lo l o posible po sible y consiga consiga el el nivel ni vel funcional m ás alto posible. po sible. No obstante, o bstante, si la presión presión para funcionar funcion ar “ a la perfec perfección” ción” supe supera ra la capa capacida cidadd de d e la persona persona afectada, afec tada, se se crea crea otra otr a tensión qu quee genera más m ás síntom síntom as as.. Por ejemp ejemplo, lo, quiz qu izáá haya observado observado di diferencia ferenciass entr entree personas con sínto síntom m as ob obse sesivo-com sivo-compul pulsivos sivos y haya comentado com entado (o pensado): pensado): “ Si esta esta persona persona puede pu ede asum asumirir responsabi responsa bilid lidades ades fam famili iliares ares y trabajar t rabajar,, ¿por ¿por qué no no
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de “ im perfec perfección” ción” . Esta stass disto distorsion rsiones es crea creann estr estrés és,, que puede exac exacerbar erbar los síntom síntom as y origi or iginar nar senti sentim m ientos de “ pérdida de control” . Usted Usted puede ayudar a la persona persona recordándolee el recordándol el prog p rogres resoo que q ue ha realizado realizado desde el el peor p eor episodio y desde que inició el trata tr atam m iento. (5)5
Reconocer las “p “pe equeñas” mej mejorías
Las personas con TOC suelen quejarse de que la famili fam iliaa no enti entiende ende lo que q ue supon suponee realiz realizar ar algo algo com comoo
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(7)7
M anten tener er una co comu mun nicac aciión cl clara y sencilla
Evi vite te dar larg largas as exp explilica cacion ciones es.. En En general, g eneral, esto esto es m ás fác fácilil de decir decir que de hacer hacer, porque porq ue la mayoría m ayoría de las personas con con TO TOC C pi piden den consta con stantem ntemente ente confirm confi rm ac ación ión a quienes qui enes les rodean: “ ¿Está stáss seguro seguro de que he cerrado cerrado la puerta?” puerta?” “ ¿Puedo estar estar seguro de que la cerré cerré bien? b ien?”” . Es Es probable prob able que usted haya descubi descubierto erto que cuanto cuanto m ás int intenta enta dem dem ostrar que no hay h ay neces necesidad idad de preocuparse pr eocuparse,, tanto m ás le refutan refu tan sus pruebas pru ebas.. Incluso Incluso
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(9))9 (9
Fij ijar ar lí límites mites,, per pero o sie siend ndo o sen sens sib ible les s al es estad tado o de de áni ánimo mo de de la la persona
Teniendo en m ente el el objetivo ob jetivo de colaborar entre todos tod os para reducir las com com pul pulsiones, siones, los familiares fam iliares pueden darse cuenta de que tienen que qu e mostrars mo strarsee firmes firm es en cuanto a 1) los acuerdos alcanzados previamente sobre su participación participación en las com com pulsion pulsiones es,, 2) 2) el el tiemp ti empoo dedica dedi cado do a hablar sob re el TOC TOC, 3) 3) el el grado g rado de confirm confi rm ac ación ión qu quee se se le dará, dará, o 4) el perjuicio perju icio que q ue causan causan
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la exposición a sus miedos mi edos y rec r ecord ordarle arle las neces necesidades idades de otras ot ras personas person as benefi beneficia cia a la persona con TO TOC C. A m edida que recup recupere ere su funcionalidad, funcion alidad, aum aum entará su deseo de seguir avanzando. (1111 )
Recurrir al humo mor r
La ca capac pacidad idad para p ara distanciarse distanciarse uno m ism ismoo de d e los m iedo iedoss irracionales irracion ales y reí r eírse rse es es salud saludable, able, espec especialm ialm ente cuando se hace en compañía. com pañía. Eso Eso puede pu ede ser ser un gr gran an
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sola y cuidar cuid ar de sí misma. mi sma. Adem ás ás,, el el TOC no puede gobernar gob ernar la vida de todos: usted usted tiene otras otr as responsabil responsa bilidades idades ade adem m ás de hac hacer er de “ niñ niñera era”” .
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qu e sí que sí lo están pueden ayudar ayu dar a las personas con con es este te trastornoo a conse trastorn conservar rvar su funcionalidad funcion alidad y auto autoes estim tim a m ientr ientras as luchan contra los síntom síntom as as..
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Hay ejemplos Hay ejemp los parecido parecidoss en en el entorno entorn o laboral labor al y educativo.. Es educativo Es impor im portant tantee ser ser flexibl flexi ble. e. La Lass personas con TOC son concienz con cienzud udas, as, tr trabajador abajadoras as y se preocupan preocup an por po r hacer las bien. bi en. Aun e posiblem posib lemente ente a vec
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sus fuerzas fuerzas ocul ocultar tar esas esas con condu ductas ctas com compu pulsiv lsivas as po porr m iedo a que algui lguieen lo des descubra cubra,, ya que “ m e encerra enc erraría rían” n” , “ sa sabría bríann que estoy estoy verdaderamente verdaderamente loco” , “ charía cha ríann de su lado” . D dor del
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Los niños niñ os prec pr ecisan isan que qu e se les dé una especie especie de marco m arco para entender lo l o que q ue les pasa. pasa. A vec v eces es no pu pueden eden explicarlo a menos m enos que un adulto les ofrezca ofrezca varias posibilid posibi lidade ade Un niño ni ño puede decir decir con aliv alivio io “ ¡Sí ¡Sí!! E
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