Mi enfermedad crónica es “invisible” no “imaginaria”

Vivimos en una sociedad donde la enfermedad crónica permanece invisible  . Hablamos de realidades tan duras como la fibromialgia, que es para muchos esa dolencia imaginaria con la que se justifican sus ausencias laborales. Tenemos que cambiar las mentalidades: no hay necesidad de una herida que podamos ver para que el sufrimiento sea auténtico.

Las enfermedades crónicas socialmente invisibles (ECSI), según datos de la “Organización Mundial de la Salud” (OMS), representan casi el 80% de las dolencias actuales. Hablamos, por ejemplo, sobre enfermedades mentales, cáncer, lupus, diabetes, migrañas, reumatismo, fibromialgia …  enfermedades debilitantes para quienes las padecen y que también obliga a las personas enfermas a enfrentar una sociedad que también está acostumbrada a juzgar sin saber.

“Al final del día podemos soportar mucho más de lo que pensamos”

-Frida Khalo-

Vivir con una enfermedad crónica significa, a su vez, hacer un viaje tan lento como solitario. La primera parte de este viaje es la búsqueda de un diagnóstico definitivo para  “todo lo que me sucede”. No es fácil. De hecho,   pueden pasar años hasta que la persona finalmente logra nombrar lo que habita en su cuerpo  . Más tarde, después de haber asumido la enfermedad, llega lo más complejo: encontrar dignidad, calidad de vida con dolor como compañero de viaje.

Si agregamos incomprensión social y falta de sensibilidad, entenderemos por qué la  depresión a veces se agrega a la enfermedad primaria.  Por otro lado, no olvide que una buena parte de los afectados por enfermedades crónicas son niños.

Es un tema relevante y con profundidad en la sociedad para reflexionar.

hombre con enfermedad crónica

Tengo una enfermedad crónica que no se ve, pero eso es real.

Muchas personas afectadas por una enfermedad crónica a veces sienten la necesidad de llevar una señal  . Una etiqueta con letras muy grandes que explica lo que les sucede, para que el resto lo entienda. Para entender mejor esta realidad te daremos un ejemplo.

María tiene 20 años y va a la escuela en coche. Aparcar en el espacio para minusválidos. Más tarde, toma un paraguas para entrar en su aula. Un día, ve su imagen compartida en  las redes sociales  . La gente se burla de ella porque es excéntrica, porque camina en un paraguas. Además, la insultan porque tiene la  “cara grande”  de estacionarse en el área de discapacitados y se ve muy bien: dos piernas, dos brazos, dos ojos y una cara hermosa …

Ahora, días después,  María se ve obligada a hablar con sus compañeros de la universidad: tiene lupus. El sol reactiva su enfermedad y también lleva dos prótesis en las caderas. Su enfermedad no es visible a los ojos, pero está ahí, cambiando su vida, desafiándolo cada día para que sea más fuerte, más  valiente  .

Ahora …  ¿Cómo vivir sin estar describiendo continuamente su dolor, sin apoyar en cada paso las caras de escepticismo o compasión?

enfermedad crónica fibromialgia

María no quiere decir en todo momento lo que le sucede. No quiero un trato especial, solo quiero respeto, comprensión. Sé normal en un mundo donde lo particular es reificado. Porque  “si uno está enfermo, debe ser observado, debe ser visto y poder ser señalado”.

Migrañas, dolor en la sombra.

Las migrañas, el dolor en la sombra Las migrañas no son un simple dolor de cabeza, es una pesadilla para el cerebro que me hace temer a la luz, olores fuertes … Eso me obliga a buscar el silencio.

Las enfermedades invisibles y el mundo emocional.

El grado de incapacitación de cada enfermedad crónica varía de persona a persona  . Habrá quienes tengan más  autonomía  , y también habrá quienes, por su parte, puedan ser más o menos funcionales dependiendo del día. En este último caso, la persona tendrá instantes en los que la enfermedad lo atrapa y momentos en los que, sin saber por qué, se siente más libre de la enfermedad.

Hay una organización sin fines de lucro llamada ”  Invisible Disabilities Association  ” (IDA). Su función es educar y conectar a la persona con una “enfermedad invisible” con su entorno más cercano y con la sociedad misma. Algo que queda claro en esta asociación es que  vivir con una enfermedad crónica es un problema, incluso en el entorno familiar o escolar.

niño después de un vaso

Muchos pacientes adolescentes, por ejemplo, a veces reciben reproches de su entorno porque  creen que utilizan su enfermedad para no cumplir con sus obligaciones  . Su cansancio no se debe a la pereza. Su dolor no es una excusa para no ir a la escuela o no hacer su  tarea  . Este tipo de situaciones son aquellas que gradualmente pueden terminar desconectando a la persona de su realidad hasta que, si es posible, se vuelve aún más invisible.

La importancia de ser fuerte emocionalmente.

Nadie ha elegido sus migrañas, su lupus, su  trastorno bipolar  … Lejos de renunciar a lo que a la vida le ha gustado ofrecer, solo hay una opción. Asumir, luchar, ser asertivo, levantarse cada día a pesar del dolor o el miedo.

  • Una enfermedad crónica implica tener que asumir muchas peculiaridades que la acompañan. Uno de ellos está aceptando que seremos juzgados en algún momento. Tenemos que prepararnos con estrategias de afrontamientoadecuadas   .
  • No debemos dudar en decir lo que nos sucede, para definir nuestra  enfermedad . Lo invisible debe hacerse visible para que los que nos rodean tomen conciencia  . Habrá días que podamos con todo y momentos en los que todo puede. Sin embargo, seguimos siendo los mismos.
  • También debemos ser capaces de defender nuestros derechos. Tanto a nivel laboral, como en el caso de los niños en centros educativos.
  • Neurólogos, reumatólogos y psiquiatras recomiendan algo esencial: el movimiento. Tienes que moverte con vida y levantarte cada mañana  . Aunque el dolor nos hace cautivos, debemos recordar una cosa. Si nos detenemos llega la  oscuridad  , las emociones negativas y la depresión…
mano con mariposa

Para concluir, una cosa que debemos tener en claro es que las personas afectadas por enfermedades crónicas socialmente invisibles no necesitan nuestra compasión. Tampoco les damos un trato favorable. Lo único que exigen es empatía, consideración respetuosa … Porque a  veces, las cosas más intensas, maravillosas o devastadoras, como el amor o el dolor, son invisibles a los ojos.

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