Talking about T1D

By Kerri Sparling

“Hi! I’m Kerri, and I have type 1 diabetes.”

This is not normally the way I introduce myself to people. (Actually, this is never the way I introduce myself to people—bit of a creepy opener, wouldn’t it be?) I’m not shy when it comes to talking about my type 1 diabetes (T1D) to new friends and acquaintances, but I do not come right out with that disclosure on the tip of my tongue.

Type 1 diabetes comes up easily in conversations, since it is a disease that touches so many aspects of my life. Having dinner with new friends or business associates provides me with an opportunity to gently disclose information about T1D. A quick finger prick under the table may catch someone’s eye, allowing me to say, “I’m a diabetic.” These moments, if handled gracefully and openly, can let diabetes slide quietly into a conversation without forcing me to give some kind of long explanation. But it can be a little awkward and sometimes downright daunting to discuss this disease.

Whom Do I Tell?

Who needs to know that I have T1D? I was diagnosed as a child and immediately under the care of my parents. I wasn’t able to make sound diabetes decisions yet, so I needed a flock of informed caregivers. Before I could sleep over at my aunts’ houses, they had to learn the basics about blood sugars, insulin, and food to keep me safe. The same was required for the people who babysat for my brother and sister and me, and the same for the teachers in my classrooms.

Knowledge about my T1D gave other people the power to protect me. A heightened awareness led to a greater level of safety for me. As far as my parents were concerned, I wasn’t properly protected if my friends and caregivers didn’t know I had T1D. They were not always planning for the worst. But instead, they were constantly thinking ahead. I adopted that way of thinking forward as I grew older, realizing that there may be moments when I am unable to speak for myself. Telling people helps keep me safe—and it allows people to help me when I may need them most. Also, feeling alone with T1D does not do much for my emotional well-being, so sharing my disease keeps me healthy on many levels.

Disclosure Statements

My best friend knows I have T1D. I don’t remember having a serious, sit-down discussion with her about it, but since both of her parents have type 2 diabetes and she is an emergency room nurse, her level of understanding is higher than most. We’ve been friends for more than twelve years, and we have gone on vacation together, gone out to parties together, and are now raising our young daughters to be best friends together. She has helped me manage everything from blood sugar lows while out at the bar (she once had to strong-arm a bartender to provide “a glass of orange juice—no ice, no alcohol!”) to making sense of the insulin resistance during my pregnancy—and everything in between. Having her in the diabetes loop not only kept my physical health maintained, but also my emotional health.

Telling her was easy. But what about strangers? How about the white-water rafting guide who received a crash course on Diabetes 101? My friends and I decided it was best to fill him in on my T1D status because he was in charge of the well-being of the entire group, so he needed to be aware of all serious health issues. (And also because we wanted him to carry my spare insulin pen in a plastic bag tucked into his vest pocket, just in case.)

And then there was the time I needed to tell a flight attendant on an airplane that I had T1D, because I could not gobble up glucose tabs fast enough to combat a severe low, and I needed someone to know about my T1D in case I lost consciousness. (He was very kind, brought me two extra cans of fruit juice, and stood close by until I had stopped shaking.) I have also informed the people who are employed at my gym, because I work out alone pretty often and wanted someone to think “diabetes” first if I were to ever hit the deck while running on the treadmill.

Sometimes, when T1D throws you a curve ball, these strangers become the best friends you can have.

It Can Be Scary

Being open about your T1D can be intimidating. It is not always the easiest thing to talk about, especially if you are someone who prefers to keep that card close to his or her chest. You may be concerned that someone might judge you for having T1D, or might force their misconceptions and/or “well-meaning advice” on you. You might be worried that you are placing a “burden” on someone by disclosing your disease and making them feel responsible for you. Or you just plain might want to keep that information to yourself. There aren’t any rules about how, when, and why you talk about T1D.

In my twenty-five years with T1D, I can count the number of times on one hand that T1D has been viewed as “troublesome” by others. And in every one of those cases, the underlying issue was not T1D itself, but either a misunderstanding, a misconception, or a missed opportunity to educate. (Like when my ex-boyfriend’s mother called me “unfit to date” because I was on insulin. Little did she know that taking insulin was what helped me stay healthy, fit, and on track with my diabetes management. A little education could have gone a long way in that situation.)

Disclosure can also be an issue during situations such as job interviews. In the past, I didn’t want anyone knowing I had T1D until the deal was closed. When an interviewer looks at me, I want him or her to see a potential employee who is ready to give her all at the workplace, not one perceived as someone who will take extra sick days and will not be able to perform. People with diabetes are protected by the Americans with Disabilities Act and employers are not to discriminate against someone for having diabetes. This is the reason why I wait until I have been offered, and have accepted, the job to then talk about my T1D.

It Can Be Empowering

Every person with T1D handles disclosure differently, and there is no “right” or “wrong” way to go about handling discussions about your disease. You choose what works best for you. For me, most people who know me also know about my T1D—and my health and my life are better for it.

Informing others about diabetes can be empowering. When you tell your friends and co-workers about your disease, you are increasing your own support network and casting a wider emergency safety net for yourself. And by educating others, you’re helping people better understand the ins-and-outs of life with T1D, bringing a heightened awareness for people with diabetes as a whole. Through these moments of sharing, we can learn from and support one another, and live fuller lives as people with T1D.

Kerri Morrone Sparling has been living with type 1 diabetes since 1986, and is the creator of SixUntilMe.com. She is a freelance writer, global public speaker, and lends her voice to many diabetes-related publications, conferences, and causes. Her diabetes-related disclosures can be found here: SUM Disclosures. Kerri lives in Rhode Island with her husband and their daughter.