Almost three months ago, I joined the T1D Exchange team as a clinical research manager. I continue to be impressed with the passion and level of commitment among my colleagues to improve the lives of people with type 1 diabetes (T1D). Recently, our team has been working on an important campaign to #SmashDiabetes. When the campaign was in its infancy, I began thinking of what frustrated me most about diabetes. Many of us likely share similar day-to-day frustrations*, but in honor of the #SmashDiabetes campaign, I would like to share some of my personal reasons that I have committed to smashing pumpkins for T1D awareness on November 1st.
* For example, insulin pump tubing and doorknobs are generally considered mortal enemies.
- Insulin pumps and CGMs are not a cure
Life with diabetes has become more manageable in recent years. We have smaller and more comfortable blood glucose meters, smaller yet smarter insulin pumps, and new technology such as continuous glucose monitoring (CGM) systems. However, these do not replace a cure.
These devices are effectively tools that allow us a more convenient way to perform the T1D-related tasks required of us. And even then, those devices are not perfect.
- Insulin pumps and CGMs are not perfect
As I write this, my CGM shows “???” instead of a number. The number (when I do see it) can deviate up to 20% from the actual value. For example, my CGM may show “95 mg/dl”, but could actually be anywhere from 76-114 mg/dl. That’s a fairly big difference.
With my insulin pump, I generally enter a bolus and expect the pump follow through on its end of the bargain. But, sometimes, my blood sugar may go high instead, due to air bubbles in the pump reservoir, a bent cannula, or problems with my tubing.
Recently, a Glu community member wrote, “My biggest frustration is that the technology isn’t perfect. I hate reading ‘error’ on my glucose monitor. I have a pump that has tubing and I hate that. Tubing sometimes gets in the way when it snags on something.” She went on to say, “Most of all, the technology does not automatically dose to my body’s needs of insulin. Often, I am left guessing doses.”
Without a question, living with diabetes has greatly improved. Innovative technology has played a major role in the relatively improved quality of life that we experience. However, the cure is not yet in sight, and that should still be our number one priority.
- T1D affects more than just the person with T1D
When a child is diagnosed with T1D, it affects the entire family. When I was diagnosed in 1993, my parents took on another full-time job: worrying about me. My three brothers had questions and their own fears, but were not sure whether they could talk to me about them.
I recently asked my father about his experience during my diagnosis. He and my mom felt a lot of guilt, wondering why they didn’t recognize my symptoms sooner. They feared the inevitable low blood sugars, wondering how to manage them if they occurred during the night or while I was at school. They wondered if they knew enough, and how they should educate family and friends about my new condition. Ultimately, though, the biggest emotion my father felt was helplessness—diabetes was the one thing he couldn’t “make better” for me.
After talking with my dad, I asked my husband about his biggest challenge, having a wife with T1D. His answer was one that we both share. We eventually hope to start a family, which should be an exciting and joyous time in our lives. However, we already see the long road ahead of us—one that involves frequent appointments, constant monitoring, the fear associated with maintaining tighter control during a pregnancy, and the inevitable guilt that comes when that control is loosened for even a moment.
In the interest of covering all my bases, I consulted my five-year-old niece, Linnaea. I showed her my new (at the time, about a week old) CGM, and explained what it would do. She asked, “Does that mean we can play in the yard for a long time, and you won’t have to keep leaving to prick your finger?” As it turned out, her biggest frustration was the interruptions in our time together.
- We are not perfect (we only look that way)
Over the last 21 years, I have frequently encountered the mindset that people with T1D are either well-controlled or uncontrolled, compliant or non-compliant. In reality, many, many factors play a role in how well our diabetes is controlled. I often tell people that if I have two days where all factors (food, exercise, and insulin) are equal, my blood sugars may still be dramatically different. Many other factors play a role—illness, stress, different types of exercise, medications unrelated to diabetes, and the list goes on.
- Many of us remember life before T1D.
I was diagnosed at 12 years old, so I remember my life before T1D crashed the party. Many people with T1D have had the thought, “What would my life be like if I had not been diagnosed with diabetes?” My stomach would not feel like a pin cushion. I could spontaneously chase my niece around the block or go for a bike ride with my husband. In those moments, we think about our life before diabetes, but also for the life we had imagined for ourselves.
On a recent Question of the Day, we asked, “What is your definition of a cure?” We had a wide range of thoughtful responses. Many of these responses focused on what life would be like if a cure were discovered. One Glu user wrote, “Cured means being able to do everything like I used to be able to do before getting type 1 diabetes.” Another user added, “A cure means diabetes would just be a bad memory.”
For those of us who remember a time before diabetes, we want our lives back.
On November 1st, I invite you to join us, as we #SmashDiabetes together. In doing so, we bring awareness to the frustrations and challenges of living with T1D, the desire to support those affected by diabetes, and a commitment to advancing critical research. Join us here.