Following the thoughts discussed here.
As each person with diabetes struggles to come to grips with the daily routine of blood glucose management, he or she develops a quasi-technical vocabulary specific to his or her diabetes. This vocabulary may be as basic as “take this pill with breakfast” or as intricate as determining a schedule of pre- and post-prandial blood glucose checks, insulin schedules (type, dose, location, and timing), and dietary management, as well as a long list of tests for metabolic functions, cholesterol levels, hormone levels, and antibodies. Unless these words and tests have an agreed-upon meaning for us, our healthcare teams, and the people around us, they are no more real, no more meaningful, and no more relevant, than the “technobabble” spouted by the star of an obscure science-fiction show might be to our daily lives…
(What is the appropriate matter-to-antimatter intermix ratio? Always one to one, sir! Nevermind that real-life antimatter and Star Trek antimatter are as different from each other as Type 1 Diabetes and a Windows Vista computer…)
Unlike the way many perceive an engineering curriculum, there really is no one-to-one, perfectly-understood unity between the doctor’s words and yours – or between yours and mine. My Type 2, diet-and-exercise-controlled high blood glucose reading might be your “I couldn’t get mine down that low and not start shaking”; conversely, lows my doctor said would kill me are often part and parcel of a Type 1’s (I hope not quite!) daily normality. Our doctors, if not also diabetes patients, see the statistics (“your LDL is high”) and engineered solutions (“I’m putting you on Zocor”) rather than the qualitative experience of managing our diabetes around the demands of job (surprise all-hands meeting during lunch, no food in conference room) and family (need to get the kid to the emergency room pronto! worry about food later!).
Nevertheless, we develop a lingua franca in which we translate quantitative analysis into qualitative actions, ranging from correction boluses for unexpected highs and social and dietary changes (where possible) to correct longer-term issues. We translate the doctor’s technobabble into simpler words and phrases for the lay folk around us. For most of our friends and family, “I’m high (or low) and need to -----” is more useful than the actual latest reading. We sometimes disguise our needs and our frustrations with what Kerri Sparling calls “Diabetes Terms of Endearment” – phrases such as “shooting up” for injecting insulin, or “dead strips” for “used glucometer test strips”.
Any or all of these can also become “safe words” in the sense that they are key phrases intended to alert us, or those around us, to conditions that can affect our immediate health and safety. For most of us, “low” is a “safe word” – it means, “I have to get sugar into my body now”. If my Other Half snaps at me for no reason and I ask, “When did you last eat?”, it suggests that he might be snapping at me because his blood glucose levels have dropped below a reasonable level for him, without saying, “Honey, test your d— blood sugar, NOW!” Again, these “safe words” are only “safe” if they’ve become part of our lingua franca diabetica.
On TuDiabetes – indeed, throughout the diabetes online community – we have developed our own lingua franca diabetica. Many of these are abbbreviations – not unlike what we used to use back in the days of BBS’s and limited network access – but specific to diabetes. After a short while here most of us know, without a second thought, that “T1” means “Type 1 (autoimmune) diabetes”, “CGM” is a “continuous glucose monitor”, and “strip” is not a command to disrobe. We know that “meter” is a glucometer (or blood glucose meter), not a parking meter (unless we are specifically talking about parking our cars), and “our” ADA is the American Diabetes Association, not the American Diatetic Association, even if the two organizations sometimes do collaborate. With this abbreviated common vocabulary, we are able to discuss our states of health, our treatment plans, and our frustrations. We are able to gather together more intelligent questions to ask our doctors, and ways of determining whether are doctors are helping us stay as healthy as possible. We are able to learn ways of educating our friends and families to our specific diabetes needs.
Doctors, CDEs, friends, families, communities… Where have you created your own lingua franca diabetica – and where do you feel you need one? Do all parties understand each other sufficiently – or you separated by a common terminology?