The Language of Rare

By 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 over the story.

As a mother of a child with medical complexity and severe disability, I quickly realized the words I use have the power to give me courage or magnify my fears. That realization made me intentional about how I describe myself as his mother, him as an individual, and our collective family journey.

Many parents of children with rare disease, and individuals with rare disease themselves, have a shift in identity. Often we need to shift our career 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 ___ .”

After my son’s diagnosis, I no longer felt that the word “mom” accurately described my role in the family. I was my son’s home nurse, personal social worker, tireless advocate; and I was grieving. My role had diverged from a typical experience, and the combination “rare mom” nicely captured my changing identity.

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.

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 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 to 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 anyways, 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 about the diagnosis to 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, 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.”

“If we understood the power of our thoughts, we would guard them more closely. If we understood the awesome power of our words, we would prefer silence to almost anything negative. In our thoughts and words, we create our own weaknesses and our own strengths.” - Betty Eadie

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