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Quando la sclerosi multipla diventa racconto

All’Ospedale Binaghi di Cagliari il progetto di medicina narrativa che lega l’aspetto biomedico, quello personale e sociale costruito dalle storie raccontate dai pazienti

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Articolo condiviso da SardiniaPost

“Tra Illness disease e sickness: educare alla salute nella sclerosi multipla“. Le parole sono l’anima del progetto di ricerca di medicina narrativa del centro sclerosi multipla dell’ospedale ‘Binaghi’ di Cagliari. “Le persone si possono curare meglio anche attraverso il racconto”. Ne sono convinti il professore antropologo Alberto Caoci e la ricercatrice dell’Università di Cagliari Eleonora Cocco che hanno collaborato per mettere in piedi un progetto di medicina narrativa che lega l’aspetto biomedico, quello personale e sociale costruito dalle storie raccontate dai pazienti (e non solo) affetti da sclerosi multipla.

Eleonora Cocco è una ricercatrice del centro sclerosi multipla dell’ospedale ‘Binaghi‘, mentre il professore antropologo Alberto Caoci ha collaborato nello studio degli aspetti antropologici e sociologici della sclerosi multipla dal quale è emerso che alcuni fattori importanti sono quelli di allargare il discorso dei vissuti e delle esperienze di malattia che non sono intercettate dal linguaggio tecnico e specialistico della biomedicina ma bensì dalla medicina narrativa. Una disciplina già diffusa da alcuni anni anche in Italia che si concentra sul ruolo relazionale e terapeutico del racconto dell’esperienza da parte del paziente, e nella condivisione della stessa attraverso la narrazione, con il medico che lo cura. Pertanto se da un lato l’elaborazione del racconto permette al paziente di riflettere sulla propria condizione e viverla in una prospettiva meno negativa, dall’altro si può migliorare il rapporto medico-paziente.

Mattoncino dopo mattoncino si costruisce un canale comunicativo che aiuta la relazione terapeutica e a restituire al malato la propria dignità di persona che va ‘accolta’ e ascoltata, non soltanto esaminata dal punto di vista clinico.
“Anche nel campo della salute in senso stretto è necessario portare dentro le storie delle persone con malattia- ha spiegato il professor Caoci- si crea un legame di fiducia e assieme si costruiscono i percorsi terapeutici, facendo così si riescono a curare meglio i pazienti”. È nata per questo motivo la collaborazione tra i rappresentanti di due discipline come la neurologia e l’antropologia medica.

Il progetto è iniziato nel mese di giugno del 2015. Sono state fatte una trentina di interviste tra i pazienti malati di sclerosi multipla e tra le persone che forniscono assistenza (medici, infermieri e operatori). Ma non solo, è stato chiesto alle persone affette da sclerosi di scrivere un testo sulla malattia per descriverla nelle sue fasi ‘ieri, oggi e domani’. Un esempio di ‘medicina narrativa’ è il blog di Stefania Unida (http://www.flipout4ms.com/), cagliaritana trapiantata in Inghilterra dal 2011 che ha deciso di mettere nero su bianco le prime fasi della sclerosi multipla, raccontando la sua esperienza di vita e accogliendo le storie di chi, come lei, convive con la sclerosi. “La malattia crea nelle persone una rottura biografica. Ovvero: è una destabilizzazione che una persona vive in rapporto al proprio corpo, identità e società- racconta la professoressa Cocco- affrontare la malattia vuol dire darle un significato”. continua a leggere

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