Il linguaggio del raro
Immagine da Freepik
Da Laura Will
When we enter the world of rare disease, our vocabularies rapidly expand. At first, it is the medical language: tongue-twister diagnoses and medications. We become increasingly adept at recounting the rare medical journey to the next doctor or concerned friend. It can be an exhausting process, but with time the jargon feels less foreign and less frightening. We begin to take ownership of the story.
Come madre di un bambino con una complessità medica e una grave disabilità, mi sono subito resa conto che le parole che uso hanno il potere di darmi coraggio o di ingigantire le mie paure. Questa consapevolezza mi ha fatto riflettere sul modo in cui descrivo me stessa come madre, lui come individuo e il nostro percorso familiare collettivo.
Many parents of children with rare disease, and individuals with rare disease themselves, have a shift in identity. Often we need to shift our careers or our hobbies. Our days fill up with medical management tasks. We may not have the time or emotional/physical bandwidth to connect with old friends. Our identities are altered, either suddenly or slowly. The American lay preacher Joel Osteen once said, “I am – two of the most powerful words. For what you put after them shapes your reality.” And so, I challenge you to be intentional and kind as you finish the sentence, “I am ___ .”
Dopo la diagnosi di mio figlio, non sentivo più che la parola "mamma" descrivesse accuratamente il mio ruolo nella famiglia. Ero l'infermiera a domicilio di mio figlio, l'assistente sociale personale, l'instancabile sostenitrice; ed ero in lutto. Il mio ruolo si era allontanato da un'esperienza tipica e l'espressione "mamma rara" descriveva bene il mio cambiamento di identità.
Per coloro che si prendono cura degli altri, le parole che usiamo per descriverli hanno il potere di inquadrare la loro esperienza, nel bene e nel male.
For those of us caring for others, the words we use to describe them have the power to frame their experience, for better or for worse. The first thing I learned was to use person-first language. For example, my son is not a “disabled kid;” he is a “kid who lives with a disability.” It has been a process of trial and error. Now, instead of telling strangers who kindly try to engage him in conversation that he is “non-verbal,” I say, “he does not use words to communicate.” This clarifies that he is not going to give them the verbal response they expect, while also implying that he does communicate.
When speaking to other rare parents about these public interactions, when strangers, nurses, or school teachers may not see our kids the way we see them, we agree that it can be tiring, demoralizing, and frustrating. Perhaps they have not (yet!) had the life experience that has enlightened us to perceive the innate humanity and worth at the center of every person. Instead, they see what is different, ill, or disabled; perhaps, they even use language that we have learned does no good. One mom spoke about how it takes a not-so-negligible amount of energy to engage with people who don’t get it, who don’t know, or who cannot see our child as we do. But, she finds herself engaging with these people anyway, because (in her words), “if I don’t, who will?”
Finding the language that suits us is an important part of the journey. It’s a responsibility; our language has a really profound impact. After sharing the diagnosis with another, caregivers often find we tack on uplifting comments like, “And he’s so happy and social,” or others say something like that back at us. What does this additional comment do? Does it make our child more approachable and relatable? Or are we somehow working too hard to justify their life, when we should not need to? Perhaps we should lead with these uplifting comments, instead of adding them as a kind of afterthought.
Our language teaches others a perspective, it reveals what we prioritize. So, next time I see someone looking inquisitively at me as I attach my son’s G-tube at the playground, they may get more than they bargained for when I turn to them and say, “Hi, yes, this is my son. He is 3 and loves playing with trains, and reading books, and absolutely adores his big sister. He is also a wheelchair user and is fed with a g-tube due to an ultra-rare condition. He communicates differently than you and me, but he understands everything we say. So, be careful with your words.”
"Se capissimo il potere dei nostri pensieri, li custodiremmo più attentamente. Se capissimo l'enorme potere delle nostre parole, preferiremmo il silenzio a quasi tutto ciò che è negativo. Con i nostri pensieri e le nostre parole creiamo le nostre debolezze e i nostri punti di forza". - Betty Eadie
Know Rare has developed a user-friendly journaling feature to the website, where you can keep notes for yourself over time, take self-reflective surveys, and continue to find your voice as a rare caregiver or patient. Click here to make a free account.
A proposito di Rare Resiliency:
Rare Resiliency è una rubrica mensile scritta e/o curata da Laura Will. Questa rubrica esplora i concetti e le abilità che giocano un ruolo protettivo contro lo stress cronico e acuto. Ogni articolo sfida e incoraggia il lettore a continuare a sviluppare quella forza interiore che gli permette di affrontare la malattia e l'incertezza, il dolore e la gioia.
