Diabetes and the Unexpected

Between the two of us, Abby and Jenny, we have come to know that living with diabetes means expecting the unexpected.

For Abby, her most recent unexpected moment for diabetes came on her 22nd birthday celebration. I was expecting that a night with friends could have some twists and turns. What I didn’t expect was that it would be in the form of my newly changed insulin pod falling off of my abdomen, just as we got to the restaurant for dinner. I also didn’t expect that I would be virtually un-phased by this potentially night-ruining unfortunate event. But after having experienced so many unexpected things throughout my life with diabetes, all I could do was focus on enjoying my night with friends, despite having to inconveniently go home in the middle of the party.

For Jenny, her latest moment came at a recent eye exam. After decades of managing her diabetes in the fear of retinopathy, she was expecting the worst when the doctor announced they needed to have a conversation. What she wasn’t expecting was for the doctor to inform her that her vision was fading and she needed glasses. Nope, not RETINOPATHY, just getting older. Vessels look fine.

A patient with diabetes can expect many things, including the unexpected. But perhaps patients should begin to start expecting more from their providers, from the drug industry, from insurance companies, from the government, and from their own community. As we join Bitter-Sweet Diabetes in their 8th year of Diabetes Blog Week, we’d like you to consider the following:

You can expect:

To struggle with insurance companies. This may take form in prior authorizations, appeals, formulary changes, and even switching medications from the one that works best for you. This may look like spending hours on hold trying to connect the dots between the pharmacy, provider and your insurer, hopefully eventually getting the result you want, but worried because you know you may not.

We should expect:

To have access to treatments decided by you and your doctor. All too often insurance companies are indirectly making treatment decisions based on what medications and devices they do and do not cover. This may result in suboptimal outcomes compared to when patients have access to the treatment that works for them. We know that diabetes is not a one-size-fits-all disease, so we shouldn’t expect the treatment options to be either.

You can expect:

To have out of range blood sugars, but be solely judged by A1C. The nature of diabetes is to have highs and lows and even the most diligent patients can’t avoid them. So it seems contradictory that the most widely used measure for success is based on A1C. In reality, a patient can be very healthy and happy with an elevated A1C, or a patient can can be very unhealthy and have a low A1C. There is more to the story than just this metric.

We should expect:

To be seen as more than just an A1C, as more than just a number. Looking at outcomes beyond A1C should be the new normal. Patients should also be evaluated by their overall time in range and quality of life. These outcomes are a more inclusive and comprehensive way to look at a patient with diabetes well-being and health.

You can expect:

To have questions and uncertainties about where diabetes fits into everyday life. It’s expected that sometimes the seemingly most simple things in life, such as driving, exercising, dating or even wearing a dress can become complex with diabetes.

We should expect:

All patients with diabetes to have a person or place to turn to, to navigate these uncertainties. Knowing you have a network where you can ask questions, share tips, tricks and advice, and connect with others with similar experiences, should be the norm for all patients.

By Jenny McCue and Abby Lore — With us, diabetes is personal and professional.

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