Finding the right words to describe our life experiences

Words matter. For that reason, I’d like to share my thoughts on language, chronic illness, and how words shape societal views. I believe the way we use language can improve how patients living with rare conditions are seen, understood, and treated by the world at large.

I’ve lived with limb-girdle muscular dystrophy all my life and started noticing symptoms at about the age of 9. Although I was initially asymptomatic, I eventually started to feel weakness and burning in my legs when running in elementary school, riding my bike, climbing stairs, and trying to keep up with my peers playing football and baseball. After several doctor appointments, I was diagnosed with Becker muscular dystrophy at age 12, and then re-diagnosed with limb-girdle muscular dystrophy at 39.

With that, I embarked on my patient journey. However, I have a complaint about the phrase “patient journey.” Where am I going? When I hear “journey,” I think of a trip to fun, faraway places or mystical experiences — none of which accurately represents living with a rare, chronic illness.

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Moreover, the word “journey,” whether used as a noun or verb, seems universally understood. We’ve all described adventures as “a journey.” In the context of chronic illness, this implies that others can grasp the nuances of my life over time, including the loss of function and occasional bouts of anger, frustration, anxiety, and depression. The truth is, no one can fully understand what it’s like to be me because no one else shares my exact experience.

I’m also uncomfortable with phrases like “journey to recovery.” Ask someone who has survived cancer or a similarly terrifying illness if they view their “journey to recovery” as a path to enlightenment with personal growth benchmarks along the way. I’ve been hospitalized multiple times, and I can sum up the concept of “journey to recovery” in three simple words: SPEED TIME UP. That’s short for hurry up and heal my broken body as much as possible so I can get back to living my life. Again, this is not really a journey, but I appreciate the attempt to understand my situation.

So why do we use language like this? Are we trying to lessen the impact of a rare disease diagnosis? Are we aiming to alleviate stress for patients and their families? Perfume a pig? I’m reminded of the late comedian George Carlin, who joked about how language can make us sound clever, even when it makes us look foolish. One of his examples was when people at the airport are asked to “preboard the airplane”: “They say, ‘We would like to pre-board.’ Well, what exactly is that? What does it mean to pre-board, to get on before you get on?”

And so it goes. You get the point.

My takeaway is this: Please don’t assume that by labeling my disease and its progression as a “journey” you truly understand my life. I’d prefer that you talk about my life as it is, including with limb-girdle muscular dystrophy. As you learn more about me, you’ll see that many amazing things I experience have absolutely nothing to do with the disease.

I encourage you to speak with friends or family members who are living with rare chronic illnesses to understand how they feel about language like this. Going to the source will often help you learn the best words to use when discussing their health and their life.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.