Fibromialgia: la condición que nadie entiende

He sufrido de fibromialgia durante seis años. Hasta el día de hoy no estoy seguro de lo que encuentro más difícil; el dolor constante, la fatiga y una miríada de otros síntomas que vienen con el diagnóstico, o la necesidad constante de explicarlo y justificarlo.

En 2010, cuando me diagnosticaron, fue por proceso de eliminación. Me hice varias pruebas y exámenes sin conclusión, y un día le pregunté a mi médico de cabecera si podría tener fibromialgia, después de leer en línea.

Estoy seguro de que el autodiagnóstico en internet es lo único que todos los médicos generales recomiendan no hacer, pero aquí estaba sucediendo. Me remitieron a un reumatólogo que confirmó mi diagnóstico después de completar la prueba de punto sensible, y por un momento sentí alivio.

Resultado de la imagen

Pero esa cita se convirtió en una de muchas conversaciones frustrantes con médicos que no creían o no entendían mi dolor. Ese reumatólogo, que no tenía formación en psicología clínica a su nombre, me hizo la pregunta más cliché de todos ellos.

“Entonces”, dijo, “cuéntame sobre tu infancia”. ¿Te llevas bien con tus padres?

Aún así, cinco años después, estoy furioso conmigo mismo por no desafiarlo. Debería haberle preguntado por qué me estaba tirando Psicología Pop 101, pero en cambio le conté sobre mi infancia.

Sugirió que me sometiera a una serie de sesiones con un psicólogo y no pregunté por qué, simplemente asentí y lloré. Le pregunté sobre el tratamiento del dolor y cómo lidiar con él, pero me dijo que hablar con el psicólogo debería ayudar con eso.

Esa experiencia fue la primera vez que sentí una gran falta de comprensión, y cada vez es tan desgarradora como la última.

Pero no son solo profesionales médicos. Cuando a mi amigo le diagnosticaron esclerosis múltiple un par de años después, me sentí celoso. ¿Puedes creerlo?

Nunca se lo dije, o se lo confesé a nadie, pero al verla recibir tarjetas y flores de todos nuestros amigos durante las primeras semanas de su diagnóstico, me di cuenta de que pocos de mis amigos realmente entendían la fibromialgia.

Tenía citas con numerosos médicos y enfermeras, todo eso como parte de su “red de apoyo”. No había tenido noticias de nadie después de esa cita con el reumatólogo, a menos que cuente al psicólogo que me dio de alta después de tres sesiones ya que no podía “ver señales de trauma”.

No tenía esa red de amigos, familiares o médicos. De hecho, en ese momento, estaba luchando para que mi médico de cabecera entendiera el dolor en el que me encontraba.

Si sufres de fibromialgia, entonces estoy seguro de que tu camino al diagnóstico fue tan horrible y complicado como el mío. Aún no he oído hablar de un paciente que se haya encontrado con la comprensión, la creencia y la bondad de principio a fin.

Encuentro verdaderamente desconcertante que tantas personas puedan estar tan mal y, sin embargo, la falta de apoyo y la falta de voluntad para comprender es algo que se da por hecho.

Mi asesor de salud ocupacional en el trabajo me dijo: “La fibromialgia está en boga en los noughties; en los años noventa todo el mundo decía tener ME”, y mi consultor en la clínica del dolor dijo: “Muchos pacientes con fibromialgia vienen aquí llorando y en pijama”. – parece que estás bien “.

Nunca entenderé por qué comentarios como estos son aceptables, especialmente por parte de profesionales del sector de la salud.

Aún así, no es del todo malo. A medida que pasaron los años, tuve mucha suerte. Mi red de apoyo puede no haber existido al principio, pero ha crecido a medida que me he vuelto más franco sobre mi condición. Hablo de ello en el trabajo, escribo sobre él en mi tiempo libre y hago conexiones a través de las redes sociales con otros pacientes con fibromialgia.

Mi novio es un gran apoyo y nunca ha cuestionado la validez de mi dolor; su padre ha vivido conmigo por más de 30 años, así que entiende demasiado bien las dificultades asociadas con el dolor crónico y las enfermedades invisibles.

Pero, lamentablemente, he leído muchas discusiones sobre foros de fibromialgia donde los pacientes hablan sobre su falta de apoyo familiar o la falta de comprensión en su círculo social, razón por la cual los blogs y las redes sociales son tan importantes. Nos recuerdan que no estamos solos.

Hay más de 5 millones de pacientes con fibromialgia en los EE. UU. Y millones más en todo el mundo y me gusta pensar que a medida que nuestras voces se vuelvan más fuertes aumentará la conciencia, alentaremos la investigación y la educación, y la comprensión de la fibromialgia crecerá.

A medida que se desarrolla la investigación, se llevarán a cabo ensayos clínicos y quién sabe, tal vez algún día habrá una cura. En toda mi vida, sin embargo, me gustaría ver que nuestro diagnóstico significa algo.

Quiero que las personas respondan con comprensión y simpatía cuando alguien les dice: “Tengo fibromialgia”.

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