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Patient voice

Please don’t call my son a patient

Kara and Evren

I am the middle-aged mother of a son, a college sophomore, who also happens to be an older brother, co-author of a children’s book, a young man who still loves surprises, his cats, eating out, the Denver Broncos and coupons for freebies. He is kind to people of all ages and abilities. His name is Evren, sometimes shortened to ‘Ev.’ Please feel free to call him a generic term like “young man,” or a term of affection, like “Buddy,” although he is not partial to “Muffin” or similar pet names. (He’s almost twenty, after all.)

All I ask is that you not call him a patient.

Did I happen to mention that Evren also has acid sphingomyelinase deficiency (ASMD), an ultra-rare lysosomal storage disorder?

As I peruse a variety of LinkedIn posts and Google feed articles about rare diseases, I seem to be noticing a growing trend—calling the individual with a rare disease a ‘patient’–as in rare disease patient—even when that person is not actively registered in a clinic or hospital seeking care for an acute illness or treatment. What is wrong with that? you might ask. Isn’t the individual with a rare disease indeed experiencing illness? Isn’t that the definition of a patient?

Merriam Webster defines a ‘patient’ as “an individual seeking medical care for an acute illness or treatment.” While Evren does experience serious impacts of ASMD, he is not living each moment of every day in a state of anticipation, incapacitated, anxiously awaiting alleviation of symptoms following the provision of medical care in a clinic or hospital. The day may come when he does receive an enzyme replacement therapy that he surely needs. And maybe when Evren is in the hospital or our home receiving ERT through an IV, I will allow him to be called a patient.

But today and every day of his life, I choose to see my son as healthy and have taught him to do the same, even though the effects of ASMD are evident. To me, he is as optimally healthy as a person with ASMD can be. As he was growing up, especially when he tried to draw the sympathy card for having a genetic disorder, I would tell him, “Evren, you are as healthy as a little pony”. In our reality—in our definition of the word—Evren is healthy, and he cannot live his best life if he conceives of his diagnosis in terms of living in a permanently diseased state.

As a university lecturer, I assign an article written by Gordon Allport in 1949 called The Language of Prejudice. In the article, Allport explains the term, “labels of primary potency.” These labels, or names, are so powerful that they overshadow all other aspects of a person’s identity. What images come to your mind when you hear that Evrenis anASMD patient?

In your mind, is he lying helpless in a hospital bed? Having blood drawn in a clinical setting? Or is he smiling, studying, or eating M&M’s while watching the big game with his friends? Is he wearing a pale blue hospital gown or a bright red and blue Fresno State jersey and black jeans?

The name patient can color your perception of who and what my son is. The names we are called can also be powerful shapers of our self-concept, for better and for worse

Calling Evren a patient imposes on him a single-story identity while obscuring his unique individuality. The name ‘patient’ is a label of primary potency that establishes membership in a group of people, to some degree vulnerable and distressed, who lie in wait for a medical treatment that will restore their vitality. But today Evren regularly attends classes, goes out with friends, seeks adventures, is addicted to social media, and tries to encourage others at every opportunity. He “grinds,” (or studies as hard as he can for as long as he can. Or so he tells me.) Evren lives a full life despite the impacts of a chronic genetic disease. My son’s name is Evren, and he is an individual with ASMD and my dearly loved son, not a patient.

-Kara A. Ayik

To find out more about ASMD please visit: https://www.asmdfacts.com/

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