Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
December 2006 —There's so much to think about as we struggle to control our diabetes. But have you ever stopped, for a moment even, to think about what life is like for our partners and loved ones? Make no mistake: they are living with diabetes, too, and oftentimes it ain't no picnic.
My eyes were opened to this fact of life recently when my own partner encouraged me to launch a sharing forum on my web log for partners of diabetics. Being the optimist he is, my husband thought this would be a nice channel for partners to share "best practices." In a way it is, but this forum has also become host to astonishing emotional catharsis –- and a real bombshell for the people with diabetes who had absolutely no idea, like me!
Think YOU Feel Alone? Our very first contribution was from 38-year-old Anna Q, whose type 1 husband was out cold with a blood sugar low one night when she heard strange noises in their bedroom. The pair were just 6 months into their marriage at the time.
"As Jack slipped further into his low, my choice was clear," she writes. "I needed to confront the intruder to get Jack his glucose fix. So with some effort, I grew instant balls, silenced the cringing princess, and grabbed the only available weapon — a plastic curtain rod from the floor." When a trembling Anna finally managed to switch on the light, a stealthy cat "turned and bounded out the window into the night." Whew!
What did Anna learn? 1) To always, always, keep glucose in the bedroom. 2) To close the windows at night. 3) That there would be times in my marriage when I would be utterly alone to face fears, make decisions, and take action. 4) That there would be times when my husband's health rests in my hands.
Imagine living with a person who can sometimes become so unexpectedly and absolutely incapacitated — whose very life can be at risk if you, the partner, don't take appropriate action fast! This realization forced Anna to grow up that night, in a pitiless way that many partners of people with type 1 diabetes have surely shared.
Many similar stories come in as well, like the couple in New Zealand whose neighbors called the Police Armed Offenders Squad when the hypoglycemic wife protested her husband's help a little too loudly. The poor husband was trying to prepare a snack for his ranting wife, and ended up answering the door "in nothing but a pair of shorts, a carving knife in hand, as I sliced cheese for the sandwich." He was clever (or lucky?) enough to talk himself out of being arrested. Keeping your sense of humor obviously helps.
But people in the throes of severe hypoglycemia can also become aggressive and downright mean. A young wife named Kim W writes, "I know the low blood sugars affect his thinking and attitude, but sometimes he makes me so angry I just want to wring his neck! Sometimes I want to call 911… just so I don't have to be the bad guy, and be the one treated like crap when I am taking care of him." Afterwards, her husband is always sorry and actually has little idea how he's behaved during the low blood sugar, "but it's still hard."
When Partners with Diabetes Clash, and Other Hurdles Let's not forget about the many couples where both partners have diabetes. We've heard an earful about cases in which one partner is struggling to test glucose/exercise/eat carefully/take medications, while the other is "munching away on Chips Ahoy cookies without a care in the world." Not only is the muncher killing his partner's resolve, but she has to be alarmed over his long-term health, too. "One of these days I swear I'm going to whack him upside the head with his sleeve of cookies!" L.B. writes.
Many non-diabetic partners agonize over how much to get involved in the day-to-day: should they jump in to assist with things like carb-counting and refilling prescriptions? Or does this kind of help just translate into a lack of trust? Or worse, encourage passive dependency? Should they allow the person with diabetes to "do their own thing" even if their health appears to be at risk? Many would reply with a rousing NO! Loved ones don't let loved ones fall apart, right? But intervening can mean head-on conflict.
The experience of one husband who attended a support group with his diabetic wife more or less sums it up: the attendees shared all manner of horror stories about neglecting their condition, rarely bothering to test blood sugar, with some even hitting an all-time hypoglycemic low while driving on the freeway. "I squirmed and sat on my hands as each story got more irresponsible than the last. Then I blew up!!" the husband writes.
"I told them that I know everyone makes mistakes, but it was just wrong to be so foolhardy. They were not only playing dice with their own health, but with the feelings of their loved ones and the safety of complete strangers. Everything went very quiet and for a few frozen seconds, I could hear a cold wind whistling outside the window.
"Turns out I hadn't listened very hard to the introduction from the facilitator. Apparently we were there to listen and not be judgmental, that nothing was ‘wrong' and that my comments ‘weren't welcome.'" The husband was cordially asked to leave. "Well, I lost points for that," he says. "But I know why I did it -- it's because I care."
What choices do partners have, really? The opposite of this husband's antagonism is simply not caring. And that, in my humble opinion, is the only unacceptable choice.
Disclaimer dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
Last Modified Date: May 24, 2013
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One of the online diabetes groups I belong to (but don't frequently post to) is geared towards "frum" (Orthodox or "observant") Jewish people with (mostly type 1) diabetes. Most of the chat on the mailing list centers around people needing last-minute supplies before Shabbat or a holiday, where to acquire supplies and get medical help when visiting Israel, and advice on which pump is best for one's type 1 child — in other words, the usual sort of diabetes chatter, but...
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Janis Roszler MSFT, RD, CDE, LDN
Janis Roszler, MSFT, RD, CDE, LD/N is the American Association of Diabetes Educators' 2008-2009 Diabetes Educator of the Year. She is a certified diabetes educator, marriage and family therapist, and registered dietitian. Her books include Sex and Diabetes (ADA) Diabetes on your OWN Terms (Marlowe & Co) and The Secrets of Living and Loving with Diabetes (Surrey books).
Donna Rice MSW, BSN, RN, CDE
Donna Rice MBA,RN,CDE,FAADE is the 2007 Past President of the American Association of Diabetes Educators. She is a registered nurse, diabetes educator and has developed numerous educational programs on sexual health and wellness. She is the co-author of Sex and Diabetes (ADA) and Diabetes and Erectile Dysfunction - A Quick ‘n' Easy Handbook For the Diabetes Educator (Bella Vita). Her newest publication is a children's book, The Magic is Me (Searchlight Press).