I work at a Fresno-area hospice in the area of bereavement support. By background, I’m a pastor and therefore not — not! — a medical expert. When I read about our patients and their various illnesses, I feel as if I’m living in another country. It’s a place where everyone else speaks a language unknown to me. My ignorance is frequently on display!
One word recently stood out because it was so darn long . . .
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Because it’s easy to scour the Internet for clues after seeing the strangest of words written on patient summaries or spoken by hospice colleagues, and because my search included the renowned Mayo Clinic’s website, I’m confident that . . .
Thrombocytopenia is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessel holes.
Thrombocytopenia often occurs as a result of a separate disorder, such as leukemia or an immune system problem, or as a medication side effect. Thrombocytopenia may be mild and cause few signs or symptoms. In rare cases, the number of platelets may be so low that dangerous internal bleeding can occur.
Knowledge is power. Knowledge leads to better choices and decisions. Knowledge can be the difference between feeling overwhelmed and planning future steps.
Nonetheless, some words are intimidating. And not just in the medical or hospice realm. Like many kids in my generation, the film “Mary Poppins” introduced us to the silly and ridiculously long …
I recall it was during college days — perhaps a class, perhaps a late night dorm room debate — when I first learned a word that seemed as serious as it was full of vowels. Just saying the word felt like a difficult task had been started and completed . . .
According to Webster’s Dictionary, the “official” longest word in the English language (and no surprise, it’s a medical term about a disease of the lungs) contains 45 frightening letters and a token hyphen . . .
You can embark on your own quest for lengthy, complicated words. But what does this have to do with my eyes glazing over at a medical chart, wondering what a 16-letter word means? And since I quickly and efficiently discovered it was a seven-syllable word involved with blood platelets, what does it matter in terms of sharing any insights about hospice?
Words scare us. Especially words we don’t understand when they are used to describe me; especially those words that have barged their way into my diagnosis and my life. It’s one thing to chuckle at Julie Andrews and Dick Van Dyke singing a happy song in a happy movie about happy events. But it’s another for me to pronounce (or mispronounce) a tongue-twisting word that defines and confines my not-so-long future.
When patients enter hospice care, they and their families will hear unfamiliar words followed by more unfamiliar words. Inevitably, some will be medical. But there are also state/federal/military forms with odd abbreviations. There are insurance documents with byzantine phrases. On our best days, we’d be hard-pressed to understand the new and numbing words.
And hospice, for your loved one or you, never happens on anyone’s “best” day. What will you do when faced with those multi-syllabic beasts that are scary? And intimidating? And referring to you?
I hope you will say you don’t understand them, but want to. Demand explanations. When staff from a hospice asks if you understand, use the power of the most effective one-syllable words in the English language:
If you gave me a pop quiz tomorrow about thrombocytopenia, I’d be fortunate to recall it has something to do with blood and platelets. But if it impacted me — not as a word I’m merely curious about, but as a word describing my ailment, my treatment, my prognosis, my rights as a patient — then I want to make sure I know and remember it.
Don’t let any word confuse you. Do you understand it? No? Ask for the definition.
Few medical words make any of us feel supercalifragilisticexpialidocious, but no word, even the worst ones, should remain unknown if it’s about you.