When A Sibling Pretends to Have Type 1 Diabetes

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The past two weeks my six-year-old daughter, who does not have type 1 diabetes, has been wearing an old, worn insulin pump pouch that belongs to her eight-year-old brother, who does have type 1 diabetes. In it she carries a Fisher Price doctor’s beeper—what she’s been calling her “pump.” She asked to borrow a zip case that we used to fill with insulin, syringes and alcohol pads before my son switched to a pump. My daughter’s using it to hold an oval-shaped pencil sharpener covered with aluminum foil—her “meter.” There’s also a test strip container in which she’s stuffed little paper strips, each dotted at the tip with a red marker—blood for when she pretends to check her blood sugar. Her “picker” is a short, fat marker, also covered with foil. At meals she’s been asking her brother what she needs to do before she eats, copying his every move: wash hands, strip in meter, pick a fingertip, see the BG, count the carbs and bolus.

My daughter’s been taking her kit to her summer day-care program, dutifully “checking” herself throughout the day. A couple of times she’s asked me to check her “for real”—her words—before bed (her BGs continue to be in range). Last night she asked me to check her during the night, as I do her brother, only with her fake meter.

I’ve neither encouraged nor discouraged any of this. She seems genuinely interested—almost excited—about the idea of having diabetes. Her brother, perhaps used to his sister’s lively imagination, takes it all in stride, patiently showing and explaining.

Diabetes has been a constant in our lives for many years, so my daughter’s sudden modeling of her brother caught me by surprise. When my son was first diagnosed, my daughter was just a toddler. She’d choose the moments when we were giving injections or dealing with a hypo to have a meltdown. Nowadays she’ll fetch a juice box if her brother needs one or run inside from the kids’ tree fort to report that her brother feels low.

My husband and I have always tried to give the kids equal attention—and we don’t include medical attention in that equation. Regardless, after enough years it’s easy to forget what life is like for the sibling of a person with type 1 diabetes.

According to Dr. Rebecca Ruid, a psychologist at the University of Vermont Medical Center who has worked with hundred of families dealing with type 1 diabetes, my daughter’s pretending to be a person with type 1 diabetes is an example of how kids “often process and work through their feelings through imaginative play. It’s their way of making sense of the world and their experiences. It also allows them to process trauma, which can include having a sibling hospitalized and/or diagnosed with a chronic medical illness.”

So does my daughter really wish she had diabetes? Dr. Ruid says that her recent behavior “is likely her way of understanding her brother’s—and the entire family’s—experience and making it a part of her life story.”

Dr. Ruid also offered the following advice for parents of siblings with diabetes:

The most important thing to convey to anyone is the validity of their feelings. This remains true for siblings of children with type 1 diabetes. Some siblings may feel sad, others jealous, others angry. You might say, “It makes sense you feel that way. I bet lots of brothers/sisters feel that way sometimes.”

It’s important for siblings to know that their feelings are “normal” and understandable. I encourage parents not to try to change feelings a sibling has, but instead offer ways in which they can process and understand their feelings and come to terms with them. It’s common to want to jump in and point out why their feeling should change or may not reflect what you would expect them to feel. Avoid saying things like, “You shouldn’t be jealous—your sister has to get shots every day! Would you want that?”

Approaching subjects with children often involves following their lead. When they don’t understand something, they most often ask, creating an entry point to discussion. Make sure to clarify what it is, exactly, that your child is asking; adults often provide more information than is being sought, which can be over-stimulating, particularly for younger children.

Siblings might show nonverbal signs of curiosity, such as watching during part of the diabetes regimen or grimacing during injections. You might offer support by saying something like, “I’m noticing you watch when we give your sister her insulin. Do you have any questions about that?” Or, “I see that you grimace when we check your brother’s blood sugar. Are you thinking that it hurts?” Don’t give up if your child responds with a shoulder shrug or an “I don’t know.” Simply revisit the question another time.

It’s important for children to understand that diabetes is not contagious, that they will not get diabetes by spending time with someone who has it. The exact cause of type 1 diabetes is unknown. In most people with type 1 diabetes, the body’s own immune system—which normally fights harmful bacteria and viruses—mistakenly destroys the insulin-producing islet cells in the pancreas. Though we know that genetics plays a role in diabetes, there is nothing we can do to predict or prevent it. Reassure siblings that, if they are later diagnosed with type 1 diabetes, it is not the result of something that they did wrong—just like his/her sibling did nothing wrong—and that the family is well equipped to successfully cope with and manage it.

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Annie Stoltie

Annie Stoltie is a mom to two children—one of whom was diagnosed with type 1 diabetes at age 4—editor of Adirondack Life magazine and a contributing writer to publications that include Slate.com, the New York Times, Newsweek, Modern Farmer and Good Housekeeping Magazines. She’s the author of the guidebook The Adirondacks (W.W. Norton, 2012) and is currently the Writer-in-Residence at the State University of New York at Potsdam. She lives in Jay, New York.

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