My six year old daughter, newly diagnosed with Type 1 diabetes, was sitting on our sunny front porch, casually checking her blood sugar (because you know, six year olds are pretty casual about medical intervention, right?) when a good friend and neighbor walked up, watched her check, smiled, and said \u201cOh! 192. Is that good or bad?\u201d<\/p>\n
Without missing a beat, my daughter schooled that neighbor on the nuances of diabetes language. \u201cNumbers are not good or bad, Mrs. Neighbor. They are simply high or low. They are information. We don\u2019t say \u2018good\u2019 or \u2018bad\u2019 here, okay?”<\/p>\n
In life with diabetes, language can mean so very much. \u201cNo judgment, no blame,\u201d was one of the most important things we learned from my daughter\u2019s medical team.<\/p>\n
I\u2019m sure I slipped over the years, but I\u2019ve done my best to be conscious of the language I use to talk about diabetes. It goes way deeper than good<\/em> or bad<\/em>. And there are phrases we all use that I wish we\u2019d strike from our diabetes vocabulary. Here are a few:<\/p>\n \u201cHe\u2019s a rebellious teen.\u201d <\/strong>When a teen (or anyone else for that matter) nosedives in their daily diabetes care requirements, it\u2019s not always \u201crebellion.\u201d Actually, it almost never is. My child struggled as a teen. But while her diabetes care suffered, the rest of her life was charmed. She was student body president, on the homecoming court, and in charge of prom, just to name a few things she was into. She did public speaking (Even before Congress and at the DNC). She was nice to small animals and helped old ladies cross the road. She just happened to not be in synch with her diabetes.<\/p>\n Calling her \u201crebellious\u201d was like putting that letter jacket on George Costanza and labeling him a \u201cbad boy.\u201d I hear parents say it all the time. \u201cMy child is rebellious.\u201d When I ask them about the rest of the child\u2019s life, I point out that the rest of their life does not sound rebellious (sometimes, rarely, it does, and that usually is truly a case of a rebellious child, unrelated to having Type 1 diabetes). Why does this matter? Because it\u2019s discounting what the child is feeling in his or her head. And what they are feeling is this: struggle<\/em>. Hard, disappointing, life-sucking struggle. They don\u2019t need to be guided in the same as a rebellious child does; they need to be comforted and guided. Call them rebellious and they feel judged as an entire person for something that\u2019s just one small part of what they do and who they are. Rebellious is a label and usually not one that matches what is going on with a child struggling with their diabetes.<\/p>\n \u201cDiabetes never gives me a break. Never!\u201d <\/strong>This only goes to the parent or loved one, not the person with diabetes. Listen, as much as this consumes us, every single of us who does not have diabetes actually does get breaks. We may not notice them and sometimes they may seem short and almost intangible, but we have moments without it weighing us down. A young woman I know recently attended a meeting of parents of children with diabetes group. When a mother complained about not having any time off, my friend snapped and said, \u201cYou know what? You do get a break. You don\u2019t know what it is like to have diabetes keep on keeping on when you sleep, when you wake, when you watch a movie, when you do anything. I appreciate that you work hard for your child\u2014I do! But you do actually get a break.\u201d She said they almost threw her out the door. I say bravo for that dose of diabetes language reality.<\/p>\n Well taken or not, her point was on point. Plus, messaging that you see diabetes that way \u2013 even if you think you\u2019ve never said it in front of your child<\/em> \u2013 is only going to heap guilt on them. Their diabetes is consuming mom or dad\u2019s life. It\u2019s their fault mom or dad is exhausted. They are a burden.<\/p>\n If you really feel that way, there are things you can do that may lessen the burden. You can find something else to do (even if it is just an hour twice a week), and talk to a therapist about finding ways to make your life more manageable. You do get breaks. You just need to find them and then use them in a quality way.<\/p>\n \u201cI only want a biological cure. I don\u2019t care about anything else.\u201d <\/strong>Unless you are using one shot of ultralene a day via glass syringe, boiling urine for random glucose tests and not having labs like A1c\u2019s drawn, you are full of baloney. OF COURSE everyone wants a biological cure \u2013 it\u2019s madness to think otherwise. But saying you don\u2019t care about any other advances while you\u2019re actually using those advances in daily living is\u2026. duplicitous. Stop saying it. Instead, say, \u201cI love funding the biological cure science because I know others are funding the other breakthroughs. I\u2019m thankful for those as well.\u201d It is okay to support any kind of research you want \u2013 there\u2019s room for all of us here. But before you say you don\u2019t care about funding treatment\/technology research, be sure you actually mean that.<\/p>\n \u201cI\u2019m off to get my diabetes report card.\u201d <\/strong>An A1c is an amazing look into what has been going on in the body of the person with diabetes for the past (usually) three months. It is used to make plans, figure out changes or keep things the same. Period. It\u2019s not a report card or a judgment. I recently decided that, if I had to do my daughter\u2019s childhood with diabetes to do over again, I\u2019d not even tell her what an A1c was until she was quite a bit older. Why does a child even need to know? Isn\u2019t it enough to say \u201cyou\u2019re doing great. We\u2019d like to check you two more times on Saturdays, okay?\u201d Like many adults with diabetes, my daughter still dreads getting that A1c done \u2013 something people less developed countries would give anything to have. Why does she? Because my language messed with her head. Shame on me for having made it a judgment moment that comes back over and over again in her life.<\/p>\n \u201cI saved her life with that juice box.\u201d <\/strong>Listen: I\u2019m sure it was late at night or right in the middle of her playing in the yard or at a moment in time you don\u2019t usually think to check blood sugar, but\u2026 Saying you saved your loved one\u2019s life (unless you did CPR, called 911, did the Heimlich or such)<\/em> isn\u2019t the best idea if what you did was simply (and wonderfully, lovingly get juice or glucose of some kind for them when low.<\/p>\n Here\u2019s why: First, you probably didn\u2019t actually save their life in that moment. Well, not any more than we all do each morning when we feed our children breakfast and save them from starving to death. Giving someone glucose or checking for a low you suspect it, is simply finding a low and correcting it.<\/em> Why is this important? Because when children hear you say that – and even if you think they don’t hear you, they do because kids are sponges – you are instilling fear in them. You are saying that had you not intervened, they would have died. That\u2019s not good for a kid\u2019s sense of safety and well-being.<\/p>\n It also sends a message to the world at large that our loved ones with diabetes are in imminent danger. For those of us who remember the days of rampant discrimination against people with diabetes, this is a real concern. Look: if the neighbor mom thinks your child almost died at night or in the yard or on his bike all of a sudden, she\u2019s going to be hesitant to have him over to play, much less sleep over. And if the world thinks people with diabetes are just one blood sugar check (or CGM misreading) off from death, they might<\/strong> subliminally not want to, oh say, hire them for a job. (Of course this is illegal. But it happens.)<\/p>\n Why not just say what happened? \u201cHer blood sugar was low so I got her some glucose tabs. She ate them. Then she wasn\u2019t low anymore. Life went on.\u201d I know \u2013 it\u2019s not as dramatic and it does not help gain sympathy for our plight (and we do need people to care), but if the language we use to help research progress actually regresses us in our day-to-day lives, what\u2019s the point? There\u2019s no cure for diabetes yet, but there is a cure for misunderstanding. It comes with language.<\/p>\n","protected":false},"excerpt":{"rendered":" \u201cI saved her life with that juice box.\u201d Listen: I\u2019m sure it was late at night or right in the middle of her playing in the yard or at a moment in time you don\u2019t usually think to check blood sugar, but\u2026<\/p>\n","protected":false},"author":24,"featured_media":43940,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"image","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1430],"tags":[],"yoast_head":"\n