Caregiver courage: How to treat the tricks of T1D

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Bonnie O’Neil and her son Austin

By Bonnie O’Neil

A chill is in the air as the leaves begin their inevitable turn to hues of gold and fire-engine red. October is upon us, and with it come thoughts of tricks and treats, goblins and ghouls, and all things scary. We in the type 1 diabetes (T1D) community have a front-row seat to balancing the scary with the ordinary, whether the calendar reads October or January or June.

From the shocking moments immediately following diagnosis to the first sleepover permitted with a friend…from the virus that is accompanied by ketones that just won’t quit to hypo episodes that take entire sleepless nights to resolve…from leaving for summer camp to leaving for college, parents of a child with T1D quickly become all too familiar with fear.

Experiencing occasional fear is a normal part of raising a child with chronic illness. But we don’t want our fears about what might happen in the future to become so overwhelming that they become all consuming.

Below are some steps we can take to gain control over our fears and eliminate some of the scary from T1D:

  • Expect that you can’t control all aspects of T1D. There will be highs and lows (both of blood sugars and moods!); it’s just a part of the disease. By coming to expect there will be unplanned interruptions as you co-manage your child’s T1D, you begin to release the grip that the need to control the disease has over you. We diminish the power of fear over us when we accept that we won’t get everything perfect.

 

  • Educate Research has shown that the more you learn about an issue that frightens you, the better equipped you will be to address it rationally. Information truly is power. And while we know we can’t control all things (this is T1D, after all), understanding the disease better and learning about the latest research can go a long way to helping allay our fears. There is a wealth of information on the Breakthrough T1D website, as well as on many other sites. The annual Breakthrough T1D TypeOneNation Summit—to be held on February 23, 2019—is a fabulous opportunity to learn from the experts and see and touch the latest diabetes devices.

 

  • Embrace every day to the fullest. We can all take a lesson from our kids who typically live fearlessly with this disease. Because we often know more about T1D than our young kids do, we often feel it’s right for us to fear more. While it is important to learn everything we can about managing T1D so we are prepared for the future, it is equally important that we live in the present. Take time every day to laugh—deep, lung-expanding belly laughs. You’ll be amazed at how laughter is the best stress reducer.

 

  • Embrace the community. Loneliness is a significant issue for many caregivers. The feeling that most of our friends no longer understand our deepest worries and fears drives us to feel isolated and leaves us too much time alone to worry. Connecting with other parents in the T1D community by volunteering at your local Breakthrough T1D Eastern PA office or participating in the 8,000-person strong Breakthrough T1D OneWalk are great ways to know you are not alone. On-line networks like the Breakthrough T1D TypeOneNation Community Forum also provide 24/7 support when you need to hear from parents who have experienced your same fears.

 

  • Exercise good self-care. Our fears always seem greater when we fail to care for ourselves. The added burden of caring for someone with T1D, coupled with frequent interrupted nights’ sleep can allow our fears to get the better of us. As much as possible, be sure not to neglect your own self-care when caring for your child with T1D. A healthy diet, exercise, fresh air, prayer, meditation, and adequate sleep can play an important role in helping you manage the fears associated with living with T1D.

Wishing you good health and fright-free days ahead!

*If you have tried some of these suggestions and still find yourself stuck in a pattern of unhealthy fear, please seek professional help to guide you through this time.

 

Bonnie O’Neil is a member of the Breakthrough T1D Eastern PA chapter Board of Directors, where she also serves as Leadership Giving Chair. She has been actively involved with Breakthrough T1D—both in Philadelphia and London—since her son Austin was diagnosed with type 1 diabetes in 2002, at age 5.