Hospitals, MedCity Influencers

Why diabetes caregiver stories like this can inspire you (and educate you)

As a teenager living with type 1 diabetes, Christopher’s glucose monitor is his constant companion. […]

As a teenager living with type 1 diabetes, Christopher’s glucose monitor is his constant companion. Insulin and carbohydrates are his staunchest allies (or, depending on how he’s feeling, most hated enemies). Planning for uncertainty is his routine.

Uncertainty is also routine for Kristina, Christopher’s mother and primary caregiver. The stress of caring for a child with diabetes – or anyone with a life-changing illness – can be intense and constant. Days weighed down by anxiety. Sleepless nights worrying – about your child, your family, and what the next minute will bring.

While Christopher and his mother’s story is theirs alone, it demonstrates many of the universal realities of diabetes. These narratives add context to a disease that can all too often be reduced to statistics. Stories like Christopher’s help brands better understand the reality of managing a disease, and build products and messaging that improve that reality for the patient and caregiver alike.

“And there our new life began”

You have diabetes. The initial psychological impact of these three words, when heard for the first time, is in an instant shocking, deflating, and transformational. When the doctor said these words to Christopher, “I looked at the pediatrician, tears coming down, because I didn’t understand fully what it was,” remembers Kristina. “And there our new life began.”

After the numbness wears off, helplessness and confusion set in. To restore some sense of balance and control, many caregivers depend upon educational tools and resources – like diabetes starter kits or peer support groups – and lean heavily on professional expertise to familiarize themselves with the disease and all the available treatment options.

It’s not uncommon for many parents to experience a period of intense guilt as they adjust to this new life. Questions of Why him? or Why now? or What could I have done to prevent this? become top-of-mind. Many spend countless hours online, searching for a potential cure or advice on how to cope. “[M]ake sure that you take care of yourself, in addition to your children,” writes a Joslin Diabetes Center discussion board moderator to a mother of a newly-diagnosed child. “You cannot take care of your child with diabetes if you do not take care of yourself.”

“It’s a time of unknown”

Caregivers bear an incredible burden of near-constant stress and worry – especially about what can happen in moments of not being there.

Daily readiness is therefore a necessity. Sending your child to school requires careful preparation. Does he have the right food with him? Will he remember to check his blood sugar? Is the school prepared to handle a diabetic emergency?

But the scariest time of all can be at night. “The biggest fear is I’m going to be going to sleep one night and I just won’t wake up,” says Christopher. For his parents, that fear takes its toll. “The nighttime tends to be frightening for me and my husband as parents because it’s a time of unknown,” Kristina says. “My alarm clock on my iPhone is ridiculous. And, depending on the night, I’m up at all of those alarms.”

“It’s been a huge impact on our family financially”

One of the most shocking realizations for Kristina and her husband was that their health insurance wasn’t necessarily the safety net they thought it was. “I guess I was naive when he was diagnosed because we had private insurance,” Kristina says. “My husband was working for a great company and I figured, Well, this will be no problem.”

However, so many families find that it’s a huge problem. According to the American Diabetes Association, people living with diabetes have medical expenses that are, on average, 2.3 times higher than what they’d be in the absence of the disease. Average medical expenditures end up costing about $13,700 per year, with about $7,900 of that directly attributed to the cost of diabetes management and care. And that cost is rising: a new analysis from the Centers for Disease Control and Prevention (CDC) found that the cost of managing diabetes has more than doubled in the past 20 years. The average diabetes patient spends $2,790 more per year than they did in 1987 – and more than half of that additional cost is spent on medications.

“And don’t let diabetes ever stop you”

Patient and caregiver stories can provide unlimited inspiration and insight for improving care, and many companies are realizing the benefits of listening, learning, and empathizing with those managing health issues. The result is often innovative, patient-inspired solutions – like easier-to-use blood glucose monitors and insulin delivery systems, for example – that improve outcomes by putting the patient at the center of every decision and action.

Above all, parents just want their child to feel normal and unhindered by their condition. Whether it’s through books or toys or, of course, love, parents work hard so their children will grow up knowing that diabetes doesn’t have to hold them back.

As Christopher advises, “Don’t let it be like a barrier in your life. Just overcome it and you will [get] through it. And don’t let diabetes ever stop you.”


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Corey Schwartz

Corey is the Managing Director of Communispace Health. In her seven years at Communispace, Corey has been instrumental in growing and managing client partnerships across a range of industries, including CPG, Finance, Retail, and Health/Pharma. Corey arrived at Communispace with more than 10 years of brand management and consumer packaged goods marketing experience. Prior to joining Communispace, Corey worked for Wyeth, where she marketed leading brands such as Advil, ChapStick, Robitussin and Dimetapp and also evaluated Rx-to-OTC switch candidates. She is an expert in new product development, integrated marketing, and brand vision development as well as distribution channel strategy and partner relations.

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