Type One Diabetes Turns 10—and the Dreaded 26. A New Struggle Emerges.

Young adults, health insurance, and the daily fight against T1D.

Only a few of my readers—mostly close family and friends—know how, when, and why I started writing. So let me take a few minutes to bring the rest of you up to speed.

At this time ten years ago, our third child, Leah, who was then 16, was literally in a fight for her life. Although we knew she was very weak, we didn’t realize at the time just how sick she was.

In mid-July, we drove three hours to Peyton Manning Children’s Hospital in Indianapolis so she could have a long-anticipated spinal fusion surgery. After spending two years in a back brace for scoliosis, the verdict was that surgery was still necessary to fix the curve in her spine. (Check out my early blog posts, complete with before and after pictures, for a longer version of that story.)

The surgery went well. The recovery did not. Leah was more lethargic than she should have been. She wasn’t bouncing back as all the doctors and nurses promised us she would. And my baby girl lost her beautiful smile. She was miserable.

By mid-September—Friday, the 13th, 2013 to be exact—everything came to a head. She couldn’t make it through a school day. She was frightfully thin, even though she was always hungry. Friends hinted she looked anorexic; I assured them she was eating everything in sight.

On that Friday morning, I took her to our family doctor who was as puzzled as we were. Naturally, we all assumed this had something to do with the highly invasive surgery she had just been through. But my mother’s intuition nudged me to ask for some blood tests, just to be sure some level wasn’t off. It turned out, a level—her blood sugar—was off. WAY off. Like over-700 off. (Normal range is 70-120). Leah was diagnosed with Type 1 Diabetes (T1D).

We were relieved to have an answer, yet saddened to learn what that answer was. We found ourselves in a whirlwind of medical terminology, training sessions, diabetes supplies, carb counting, and insulin injections.

To keep our family and friends informed of what was going on (and to avoid having to answer the same questions repeatedly), I started a blog. Similar to a Caring Bridge site, it gave updates, asked for prayers, and made keeping others “in the loop” easier for me.

After four months and 15 blog posts about diabetes, insulin pumps, scoliosis surgeries, and all things medical and emotional, I was running out of material. But the writing bug had bitten me and, well…ten years later, I’m still bitten and smitten with writing.

I began writing about other topics—faith, family, biking, travel, and when we hit our empty-nest years, empty-nesting. Occasionally, I’d touch on something related to Leah’s diabetes, like the story of how diabetes went to college, why I wanted to dance at her final college piano recital, and the emotional day she graduated. As life went on, the story of diabetes wasn’t a story anymore. I didn’t need to write about or even think about it every day.

Still, every day for the past ten years, Leah has had to think about it and live with it. Every, every day. No days off. Period. 

“In 2014, Stanford University researchers estimated that people living with type 1 diabetes make an additional 180 health-related decisions every day compared to people without diabetes – that’s equivalent to around one decision every five waking minutes.” (Open Access Government, May 12, 2021) Leah figures she’s made over a half-million more health-related decisions over the past ten years than the average person.

And those decisions just got more complicated. This past June, she turned 26. Anyone with an adult child knows what that means. If your son or daughter was enrolled in your health plan, those benefits stopped when they turned 26.

For many young adults, often just starting out in their careers, the first health insurance premium deduction from their paycheck is a shock. As we shopped the two plans offered by Leah’s employer, I walked her through what a premium is, how a deductible works, the difference between co-pays and co-insurance, and what happens when you reach your out-of-pocket limit.

Then she began wading into the waters herself. Though she didn’t drown, she was close to going under several times with the stress of prior authorizations, denials, appeals, and finding new doctors (both her PCP and Endocrinologist left their practices at almost the same time she was dealing with her insurance switch). Her dad and I jumped in and threw her a life preserver several times, as we explained the tax savings of an HSA and the reasons she probably didn’t want to move to Canada (just yet), tempting as it was.

Most young adults walk into the world of health insurance with no health issues, or perhaps one or two minor ones. That was the case with our older children who had made this transition. While there was some stress, it was not unlike other stressors in their new adventure of adulting.

But young adults with Type 1 Diabetes (or other major health issues) have additional struggles. When one’s new insurance plan initially denies coverage of life-saving measures you have grown accustomed to (like supplies for your insulin pump and continuous glucose monitor), it might cause one to freak out just a little. And so begins the process of appeals. Then, when insurance agrees to cover but requires an exorbitant co-pay, it’s easy for this young adult to feel she’s falling into a bottomless pit. 

Leah is still in the thick of insurance hassles. She’s also on the brink of her 10th anniversary of living with this disease, and with that, the realization that Type One is not going away anytime soon. When that realization hit her, it hit all of us—her parents, her siblings, her close friends. Once again, as we did ten years ago, we go through a season of mourning with her. 

We mourn the loss of the carefree (pump-free, CGM-free, working-pancreas) life. We mourn the loss of time—the minutes that add up to hours and days that it takes to change infusion sets, order transmitters, make and go to doctor appointments, get lab work done, and now—appeal insurance companies. We mourn the loss of confidence in one’s body, blood sugars, abilities, and future.

It’s been a rough few weeks for Leah in the ongoing ten-year battle with this disease. And although we’re confident she’ll get through this like the champ that she is, it’s a good reminder that like Leah, so many others with T1D are suffering in silence. The CGM patch on their arm or “pump bump” under their clothes are the only outward signs of an internal fight to stay alive, stay healthy, and stay positive.

As a mom of an adult child with health issues that have become financial issues that turn into real-life issues, I thank you for supporting medical research and science that seeks to find cures for autoimmune diseases like T1D. I ask that you support legislation that strives not just for equality but for equity in access to and affordability of healthcare.

And if you would, say a prayer for Leah and others with T1D, who never, ever, get a day off.