Words are the clothes thoughts wear.
– Samuel Beckett
I struggle with words. I struggle when I counsel patients to find just the right words to explain genetic complexity while also trying to engage them in a counseling relationship. I sometimes catch myself silently groaning at the stream of what sounds like the absolutely wrong choice of words pouring out of my mouth. I wind up feeling like the voice of the parents in those Charlie Brown cartoon specials; just Wah-Wah-Wah, nonsense utterances that have no meaning or relevance to the central characters. I struggle to understand the psychological meaning of the words patients use to express their thoughts, fears, anxieties, understandings, and misunderstandings. I agonize over these blog postings, repeatedly re-working them until they have the right tone and tenor but still I always feel slightly dissatisfied with some detail of the never-quite-finished product. A close friend says that for him the wrong word is like a flat note in a musical composition. One jarring note and it takes a while for your ear to re-adjust.
So yes, I confess that I am overly obsessed with words. It is yet one more of those Devil-and-Angel aspects of my personality. Good and bad must co-exist else neither exists at all. That obsession is the impetus for this blog posting – exploring the deeper meanings, ramifications, and implications of the vocabulary of genetics, medicine, and reproduction.
I start with words that make me wince. I have previously written about products of conception, habitual aborter, and mutant. Let me add incompetent cervix and birth defect to that list. Even though these words are not used with dark intent, they say a lot about underlying unconscious attitudes and biases. Incompetent cervix is clearly a term created by men for women. Would a man who has difficulty attaining or maintaining an erection ever be said to have an incompetent penis? Birth defect is no better, though in all honesty I catch myself using it from time to time. Just another malfunctioning piece of machinery, a mistake, a reject, an inferior product of conception. And don’t get me started on crack babies. These are all judgmental and harmful words, weaponized to induce blame, shame, and guilt.
In some contexts, benign words can be manipulative, such as high risk. Every patient has a unique and flexible definition of high. But when professionals say high risk it can create a disproportional sense of worry and anxiety. For example, it is often said women 35 and older are at high risk of having a baby with Down syndrome. You can try to soften that by saying higher but the patient mostly hears the high part of that word. In fact, though, the chance that a 38-year-old woman will not have a baby with an aneuploidy is 99%. Those are pretty good odds in my book. But the presumably unconscious and unstated attitude of health care providers is that aneuploidy is an unacceptable outcome – a risk, not a probability – when they show a woman a graph or table displaying age related odds without an objective reference point to put the numbers in context. That is a lot scarier than reframing it as barely 1%, as well as sounding like an unstated scolding – “Well, if you hadn’t waited so long to have a baby, you wouldn’t have this problem.”
Some words are euphemisms. Family balancing – using reproductive technologies to choose the sex of a baby for non-medical reasons – comes to mind. It is fine and normal to want a baby of a particular gender. There are also different cultural imperatives and norms, and complicated psychological reasons why a particular gender is strongly desired.Calling it balancing glosses over the darker implications of reinforcing, and profiting from, sexism. And it implies that a family of all girls, all boys, or varying gender mixes might be out of balance.
Family balancing is a cousin to gender swaying. At first I honestly thought it referred to someone like David Bowie who seemed to fluidly float along the gender spectrum. As I have come to learn, gender swaying describes the practice of trying to increase the odds of having a baby of a particular gender by using folk methods and pseudoscientific techniques, like ovulation timing, cervical PH, and, my personal favorite, positive and negative ions in the air that can be affected by artificial lighting (just why would artificial lighting be found, uh, “down there”?). Somehow it seems more ethically innocuous than family balancing, maybe because the success rate is usually not statistically significantly greater than 50%. But family balancing and gender swaying are on the same moral spectrum. Another euphemistic term is fetal reduction, which neutrally smooths over the rougher ethical edges when a medical procedure transforms a quadruplet pregnancy into a twin pregnancy.
In genetic counseling, we try to reciprocally engage our patients to make the experience more counseling than lecturing. But there is still an underlying power dynamic that can sneak between the cracks and that can remind the patient who is in charge. An example is when we say that we take a family history. Although it is not how we intend to use the word, taking implies that I have the power to assume ownership of story that belongs to the patient, a story that is deeply personal. And by taking it, I now own this intimate knowledge and transform it into something that I reframe into a medical context that gives me power by “interpreting” it for the patient. The message can be “I know what you think about your family history, but let me tell you what it really means.” Perhaps too this power differential underlies some of the unease many genetic counselors have about Direct To Consumer genetic testing – it diminishes our gatekeeper role of controlling access to genetic testing.
Along those lines, think of the power relationship implied by medical consultation notes that state that the patient denies a family history of genetic disease or drug use or certain symptoms. Denies? Like they are suspected of lying or a criminal activity, and I am the Grand Inquisitor trying to drag the truth out of them? Were these patients ever expecting the Spanish Inquisition?
Not all of my vocabulary pondering is dark. Some reflect my personal pet peeves on usage. I am not a Language Fascist who tries to enforce arbitrary grammatical rules because, dammit, that’s the right way. On the contrary, I love language for its variety, constant evolution, playfulness, and wonderfully creative adaptability. But a few words rub me the wrong way. Pre-existing condition is an ear-sore for me. How can something be pre- to existing? Either something exists or it doesn’t. They are existing conditions. Of course, this mild upset is nothing compared to the outrage I feel at the pig-headed, uninformed, downright nasty views about pre-existing conditions expressed by the President of the United States and his lackey Director of the Office of Management and Budget, they who are too shameful to be named. Now there’s a pair of bad hombres you’d love to rope with Wonder Woman’s Lasso of Truth. Another “earitation” is when someone writes “The patient was told to return in 3 weeks time.” In that sentence, the word time belongs in the Department of Redundancy Department; the same information is communicated if the word is omitted. For my internal ear, it is a jarring note.
Another, perhaps more justifiable, pet peeve is when an author or speaker says something along the lines of “there was a 500% reduction in disease occurrence following this intervention” or “a five fold reduction in occurrence.” Sorry, just flat out impossible. Nothing can be reduced by more than 100% or 1 fold. After that, it ceases to exist (unless of course it were pre-existing) or it becomes an imaginary number*. If the number of cases of a disease decreases from 500 patients to 100 patients, that is an 80% reduction. Or there are one fifth of the number of cases that occurred prior to the intervention. And I don’t believe I am being a kvetcher here. Accuracy in statistical analysis and interpretation is at the very core of the scientific process and discourse, so it is critical to use the right words to describe research results.
There are some words that make me smile when I hear them, such as Captain Underpants’ arch-nemesis Professor Pippy Pee-Pee Poopypants or HMS Boaty McBoatface (okay, they have nothing to do with genetic counseling but even if your inner mind is not permanently mired like mine in the 8 year old boy phase, these names make you chuckle). Similarly, I smile when I hear surgeons describe large breasts as generous. How nice that someone has generous breasts! It almost sounds like a description of a wet nurse. A long time favorite is Instant Baby Formula, which I first encountered 45 years ago when I was a stock clerk at a Brooklyn grocery store. Just add water, and Voila! You have a baby. What could be simpler? None of the icky bother of 9 months of pregnancy or the agonies of labor.
I would love to hear from the Good Readers of The DNA Exchange about their thoughts on the vocabulary of genetics and medicine. What in our professional lexicon makes you irritated, raises your moral hackles, induces euphemistic groans, or you just enjoy? Given the widespread employment of genetic counselors in laboratories, is there some new Lab Vocab starting to emerge?
As Raymond Carver once wrote in a NY Times piece, “That’s all we have, finally, the words, and they better be the right ones.” So let us make sure we think carefully about them, choose and use them wisely, never weaponize them, and remember to enjoy them.
- – Yes, I know that this is not technically an imaginary number. I am just employing poetic license.
19 responses to “Euphemisms, Chucklers, Pet Peeves, And Wincers: Thoughts On Our Professional Vocabulary”
Great post! i first learned of the importance of word choice while working at a sleep-away camp. Counseling kids about their homesickness and getting fancy with words to dance around saying “m-o-m” was quite the feat. But that experience has been invaluable.
This post also brought to my memory one of my favorite quotes from the Harry Potter world – “Words are, in my not-so-humble opinion, our most inexhaustible source of magic. Capable of both inflicting injury, and remedying it.” – Albus Dumbledore
“And human speech is a like a cracked kettle on which we tap crude rhythms for bears to dance to, when we long to make music that will melt the stars.”
If Flaubert felt that, what chance do the rest of us have?
AS usual, Love the article. Some of my biggest pet peeves: being called Genetics Counselor rather than genetic counselor. When people say If you inherit “the gene” then yadda yadda rather than if you inherit “a mutation in the gene”. The term BRACA rather than BRCA. When people put an inappropriate apostrophe like in the following example: a group of GC’s. I could go on…😉
I have been married for 17 years and a GC for 15. My mother-in-law still says genetics counselor. I gave up correcting her long ago, but it hurts my ears every time.
I really struggle with ways to refer to “birth defects” without sounding pejorative, and would be happy to hear suggestions. I end up with a long description, and giving examples both benign and not, so the family has some clue what I am saying. I hate that phrase. I also hate “XX is the product of a non-consanguineous union between…” No one should be described as the product of a union. I hate reading “denies” in someone’s record as well. The things that make me laugh – see the New Yorker Cartoon bank for a cartoon with caption “Some of my measurements… as opposed to… Some of your measurements” And the Boaty McBoatface.
“Elderly primigravida” Sounds like an 80 year old who is pregnant!
I’ve also struggled with the term “counselor” as it often induces fear in patients that we are going to try to get them to do something they don’t want to. I would actually prefer the term genetic educator – not a lecturer, just a supposedly unbiased presentation of facts allowing an informed decision to be made.
Or the old “advanced maternal age” — nothing said to patients who will deliver at 34, but “advanced” at 35, that magic threshold! “Elderly primigravida, etc, is still a “current” diagnosis code in ICD 10. Horrible! We have used increased maternal age with patients 35 or over at delivery in the more recent past. In place of birth defect, which I try not to use, I sometimes use “developmental difference.”
My pet peeve?
Pt “refuses” medication/procedure/treatment. Couldn’t we say “declines”? To me, declines suggests that the patient has thoughtfully considered an invitation and decided against it. Saying somebody ‘refuses’ something suggests, to me, that they have gone rogue and have (foolishly!) decided against taking my sage advice.
I agree about “refuses” vs “declines.” Also, we use Epic and I dislike the terminology used for phone calls. Instead of “reason for call” our system calls it “patient complaint.” Keeps me guessing, each time I receive a patient’s message.
Working in a laboratory I do my share of test-requisition review and one of my biggest pet peeves is clients will mark “family history” of a certain condition and then proceed to indicate that the partner is a carrier; unless they are related I do not consider this an appropriate use of the term ‘family history’
Another wonderful article Bob! I’m with Kari on the people inherit “the gene” issue, one of my top pet peeves. I wanted to add that when we are asked to translate genetics education materials/consent forms using clear, correct, non-offensive words is crucial. Many years ago I was informed that one of the amniocentesis consents translated by the State into an Asian language stated that amniocentesis could cause “spots in the vagina” instead of “vaginal spotting”!
“inheriting the gene” is a big problem. Whenever I can – and it is now usually with friends or extended family – I introduce the term “allele” and briefly explain why it makes the conversation more clear and straightforward.
I’m totally with you on the AMA. What about EDC, confinement, really? I also struggle with people qualifying risk for others, high risk vs low risk. I was trying to discuss this topic with a student that just wasn’t understanding what I meant. At the very next clinic, where this student was observing, I had a patient with a 1/1000 recurrence risk for a dominant condition, she was petrified of this risk; I then had a second patient that same day that said “you mean to say that even with this translocation that I carry, I can have normal children? My risk is only around 20%?” He was elated at the fact that he could even have “normal” children. My student looked at me and said “ok, I get it now!” I couldn’t have planned it better, it just happened.
Instead of EDC, we are using EDD: estimated date of delivery.
Bob, I always greatly enjoy the effort you put into putting pen to paper (fingers to keyboard?) and crafting your blog posts. THANK YOU for bringing up the “denies” issue; that’s a major pet peeve of mine (especially in the teratogen counseling realm). Another I inherited from a former supervisor (now program director) in peds: “Mother reports no fevers, pain,…”. Um, the woman with whom you’re speaking has name. Use it, or at least say, “The patient’s mother reports…” Ovarian failure is another one. Just what a woman struggling with fertility wants to hear: reinforcement of her feelings of failure. Oh, how I could go on…
I look forward to hearing more from our GC colleagues!
I love it when my patients report on their forms family history of prostrate cancer… The type you get from lying down too much, I suppose. 🙂 Also, my rural patients used to tell me about their last normal mimeogram and I always imagined them trying to put their breasts onto those big copying wheels we had in elementary school!
‘Failure to thrive’ is a term that always irritates me. Parents (including friends of mine) always assume that the ‘failure’ is their own.
I echo Kari & Erin with geneticS counselor. Ugh. Saying BRACA, instead of BRCA, is right up there for me, too. And ‘elderly primigravida’ — really, could anything be worse ???
Oddly enough, even though genetics counselor sounds wrong to the ear, in fact I am in favor of it, as I have argued previously: https://thednaexchange.com/2011/11/06/sense-missense-and-nonsense-a-word-nerds-freewheeling-take-on-the-vocabulary-of-genetics/
Genetic counselor – sans s – implies that being a counselor is a hereditary condition, like we have some mutation that makes us more likely to wind up being counselors. But genetics counselor – avec s – implies what we actually do, that is, we counsel about genetics.