Estudio realizado por Retina Comunidad Valenciana.
Afectados en edades comprendidas entre los 15 y 30 años
Colaboradores:
- José Antonio Cruz. Dibujante.
- Santiago Iborra. Dibujante.
Documentos :
- No aceptación de una minusvalía. Actitud negativa y sus consecuencias. (PDF)
- Aceptación de una minusvalía. Actitud positiva y sus consecuencias. (PDF)
Un trastorno incapacitador como las distrofias hereditarias de retina puede tener algún efecto incapacitador sobre la mente del que la padece La adaptación a las DHR es un proceso de crecimiento y cambio individual y en este proceso, las intervenciones psicológicas, en sus diferentes formas, constituyen un recurso que no debemos desdeñar.
La vida es compleja y problemática para todos, por tanto, parece razonable esperar que una persona que además deba enfrentarse a las DHR pueda de vez en cuando sentirse atemorizada, desorientada y sola. Un trastorno incapacitador como las DHR puede tener algún efecto incapacitador sobre la mente del que la padece. Las personas que se enfrentan a las DHR experimentan con frecuencia importantes cambios en sus sentimientos acerca de ellos mismos y de su cuerpo, se afligen por lo que han perdido y tratan de construir un nuevo modo de vida.
Nuestra identidad personal va unida al modo en que nos sentimos, y cuando el cuerpo no responde a lo que de él esperamos y no hace lo que acostumbraba, nuestra autoestima se coloca bajo mínimos.
Lo cierto es que la actitud mental que adoptemos con respecto a la enfermedad es de gran importancia. Es fundamental pensar en uno mismo como una persona sana, activa e independiente. Es perjudicial pensar en una imagen futura como alguien enfermo, y con una vida deshecha por la enfermedad; los pensamientos y sentimientos negativos, el pesimismo, nos restarán felicidad y harán también infelices a las personas que nos rodean.
Las DHR vividas en cotidianidad se percibe como una parte importante de la realidad del paciente, que le causa molestias, le limita, modifica su carácter y le obliga a una readaptación de sus planes y por último, le define socialmente como enfermo crónico. Adaptarse a ellas, supone aprender a vivir de otra forma y, generalmente, a medida que la persona afectada acepta continuar viviendo con la enfermedad, ésta parece difuminarse un poco y pasar a segundo plano.
Este proceso de adaptación depende de la capacidad de lucha de cada persona, del ambiente que le rodee y de la propia evolución de la enfermedad. En ocasiones aparte de los problemas causados por la incapacidad, el estrés de adaptarse aviva los conflictos que ya existían en la persona o en la familia.
Asumir las características de una enfermedad no es algo tan uniforme como aceptar el diagnóstico; no hay dos personas que se adapten de la misma manera o a la misma velocidad, pero la adaptación puede ser un hecho y la calidad de vida puede permanecer elevada a pesar de los grandes desafíos de las DHR.
Responder eficazmente a estos desafíos supone hacer esfuerzos continuos para superarse a sí mismo y emplear todos los mecanismos de defensa disponibles; entre ellos está el buscar la ayuda de otras personas. Es evidente que el reto emocional que plantea las DHR es importante. En la actualidad no existe una cura para las DHR ni un tratamiento totalmente satisfactorio. Sin embargo, lo que sí son asequibles son una serie de instrumentos y de estrategias útiles para enfrentarse a las demandas de la enfermedad.
Un instrumento importante es la ayuda psicológica. Sin embargo muchas personas aún consideran el asesoramiento psicológico como una actividad para las personas inestables o emocionalmente débiles; lo consideran como una invasión de la privacidad, una manera de «sonsacar» o como un signo de que están emocional y físicamente incapacitados.
Las intervenciones psicoterapéuticas para enfermos crónicos se van imponiendo de una forma lenta en nuestro país, a pesar de que parecen incidir de forma positiva sobre la calidad de vida de los pacientes.
Estas intervenciones incluyen el asesoramiento individual y las terapias de grupos.
La intervención psicológica individual en el caso de las DHR tiene como objetivo ayudar al paciente a recuperar su sentido de autovalía, a corregir sus percepciones erróneas sobre el pasado, el presente y sobre todo, el futuro; a integrar la enfermedad dentro de las restantes experiencias vitales de modo que llegue a ser consciente de la necesidad de ajustar sus planes para el futuro y aceptar las nuevas limitaciones impuestas por la mencionada enfermedad. Simultáneamente se intenta disminuir la angustia, la pena, la sensación de pérdida de autocontrol personal y aumentar la capacidad para resolver problemas. En definitiva se intenta conseguir una mejora en su autoestima y bienestar personal.
La psicoterapia reforzará las estrategias exitosas y los recursos con que ya cuenta el paciente, los que ha ido aprendiendo a lo largo de su vida.
En los grupos terapéuticos, los propios miembros del grupo son los agentes primarios de la ayuda. En gran medida, los afectados de RP tienen una sensación de impotencia e inutilidad, temen tanto ser una carga como carecer de valor para los demás, y en la asistencia a los grupos comprueban que tienen mucho que ofrecer a los otros, lo que aumenta la sensación del propio valor.
Además, el hecho de ser útil a los demás y el salir fuera de uno mismo, ayuda a disminuir la excesiva concentración en los propios problemas que parece ser una secuela añadida a cualquier enfermedad crónica.
Una buena manera de ayudarse a si mismo y ayudar a los demás es compartir la propia experiencia. Las personas, por lo general, aumentan la propia soledad cuando son incapaces de compartir sus preocupaciones. Si bien es cierto que la soledad básica de nuestra existencia no puede ser eliminada, una cierta soledad autoimpuesta si puede ser tratada eficazmente en los grupos. En ellos se crea una atmósfera segura y de apoyo donde se pueden analizar experiencias y sentimientos de una forma abierta y tratar de encontrar soluciones para los problemas de cada día. Por otra parte, la situación de grupo puede prestar un respiro a los extenuantes esfuerzos diarios de enfrentarse al mundo de las personas con ojos capaces de ver bien.
Compartir experiencias con personas a las que les está sucediendo lo mismo que a uno, es una buena manera de encontrar respuestas y de aceptar sentimientos dolorosos. Sentir comprensión, similitud y aceptación por parte de otros nos ayudará a aceptarnos a nosotros mismos, y la aceptación de la propia realidad nos permitirá valorar y gozar lo que tenemos y continuar el camino extrayendo lo mejor de cada uno de nosotros.
El objetivo de estas ayudas psicológicas no es pues la curación, sino conseguir que el paciente recobre el control sobre su propia vida, ya que a menudo, cuando se está en una situación abrumadora, es difícil reconocer las opciones disponibles y elegir las más satisfactorias.
Aceptar la realidad y a nosotros mismos es también estar abierto a las posibilidades. Si lo hacemos, veremos que la realidad es mucho más positiva y generosa de lo que creemos.
La vida feliz no es una vida ideal sino real y la realidad contiene el placer y el dolor, la alegría y la tristeza, los problemas y sus soluciones, las frustraciones y los logros.
Vivir plenamente es crecer y desarrollarse en las posibilidades, hacer de éstas una realidad.
La adaptación a las DHR es un proceso de crecimiento y cambio individual y en este proceso, las intervenciones psicológicas, en sus diferentes formas, constituyen un recurso que no debemos desdeñar.
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