Es necesario que la sociedad en su conjunto, incluidas las escuelas, las empresas y las instituciones conozcan la realidad de estas enfermedades, paradójicamente, para construir socialmente una nueva realidad respecto a este hecho social, mediante la adopción de una perspectiva inclusiva. Para ello es fundamental conocer estas enfermedades y sus condicionantes
Por propia definición, las ER son poco frecuentes; en consecuencia, existe muy poca conciencia pública sobre este problema. El papel del enfermo muchas veces no es aceptado por la sociedad, provocando rechazo, discriminación, exclusión, falta de apoyo social, estereotipos. Esta falta de aceptación se debe a la falta de información y conciencia sobre lo que son las enfermedades raras, dando lugar al aislamiento social en escenarios como la escuela o el centro de trabajo.
El difícil diagnóstico de estas enfermedades contribuye al estigma al enfrentar al paciente a posiciones de incredulidad o acusaciones de exagerar sus síntomas. Es necesario que los profesionales de la salud estén familiarizados con las ER, para evitar la incomprensión o juicios desde la relación de poder asimétrica que se establece entre médico y paciente. El retraso en el diagnóstico es uno de los principales condicionantes, obligando a las personas afectadas a utilizar su tiempo en busca de respuestas y soluciones.
- La provisión de información a través de eventos, charlas, campañas de difusión son medios para combatir la desinformación que genera estereotipos. Sin embargo lo anterior no es suficiente. La participación activa de estas personas en la vida social y las narrativas positivas de pacientes hacen que la sociedad perciba a estas personas de una manera más cercana a la realidad.
- El apoyo y la colaboración de organizaciones como escuelas y empresas donde se dan este tipo de casos, contribuye a la creación de una base sólida para la comprensión de las ER, poniendo de manifiesto las capacidades de las personas con ER en lugar de centrarse en sus limitaciones. Es fundamental crear entornos sociales de aceptación de la diversidad para reducir las emociones negativas, tanto de quien padece la enfermedad (que suelen tener un mayor grado de infelicidad) como del conjunto de personas, ya que cuando se incrementa el apoyo social y se difunden valores de empatía y solidaridad, mejora la salud de las personas en conjunto, tal y como detectaron Alexander Haslam y colaboradores (2018).
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