As November marks Diabetes Awareness Month, I find myself reflecting on the journey I have undertaken while living with Type 1 diabetes for the past 45 years. When I was first diagnosed at age 7, managing diabetes was a very different challenge than it is today. Over the years, advances in technology, knowledge of the disease and better support have transformed my life.
When I received my Type 1 diabetes diagnosis in 1978, the landscape of diabetes management was a stark contrast to what we have today. Blood glucose monitoring wasn’t even a thing, so checking your urine was the only way to know where you stood. Further, injecting only one to two shots a day with short-acting and long-acting insulin was the regimen, which made for constantly needing to eat at the exact time insulin peaked and experiencing constant high and low blood sugars. At the time, the daily life of someone with diabetes was often overshadowed by the fear tactics employed by health care professionals to ensure compliance. I have a vivid memory of my first hospital stay when I was newly diagnosed and one nurse asking my parents to leave the room while she proceeded to ridicule me for not being able to give myself an insulin injection myself. Keep in mind I was seven and had been in the hospital for about three days as I attempted to make sense of what was happening to me. I remember her saying, “Do you want to be a burden on your parents forever?” Through tears, I summoned the courage to do my own injection but looking back, I do believe her comment about burdening my parents stuck with me for years. The focus for some at the time was on avoiding complications through stringent control, which often left me feeling anxious and guilty if I was not always doing things “perfectly,” which in hindsight was impossible at the time. A high number for my blood sugar meant I was “bad” in my seven-year-old brain and not “doing a good job.”
Being a teenager with Type 1 diabetes in the late ’70s and ’80s was particularly challenging. Adolescence is a time of rebellion and a quest for independence, which clashes with the strict regimen expected to manage diabetes without all the modern technology that exists today. I often felt like an outsider, as my peers were supportive but couldn’t relate to the daily struggle of monitoring blood sugar levels, taking insulin shots, and dealing with fluctuating moods and energy levels. As if adolescents are not full of an influx of hormones causing major mood swings, self-consciousness, and insecurity anyway, having diabetes added a whole new dimension. The stigma and misunderstanding surrounding the disease only added to the emotional burden that teenagers with diabetes carry. I continued to be in quite a bit of denial about my health through those teen years, doing everything I could to just “lay low” and “fit in.” I did many things that were in direct conflict with what I was “supposed” to be doing to manage my health, which I am sure continued to add to feelings of guilt and shame. I also recall my mother telling me years later that she was “afraid” to let me leave the house but knew she had to if I was to grow up as a “normal” teenager. Now that I am a parent, I have great empathy for how difficult this must have been for her, and I am also grateful for her giving me the freedom I needed despite what must have been an overwhelming concern for my health and safety.
All of that changed in my 20s when I finally decided to take a more proactive approach to managing my health now that I was an adult. I made an appointment with a doctor in my new hometown and still remember to this day the anxiety I felt sitting in the waiting room. I was literally shaking with stress and fear that he, too, would guilt and shame me and tell me all the horrible things that were going to happen to me if I didn’t take better care of myself. Miraculously, Dr. Paul Speckart was the first physician who met me exactly where I was when I told him I had come to see him to start taking better care of myself. He said, “OK…let’s do it!” and didn’t even mention what I had or hadn’t done in the past. At the risk of being overly dramatic, that doctor changed the course of my life…I fully believe that. Because of him, I was able to navigate through the next couple of decades, learning to let go of the guilt and shame that I had associated with caring for my health and was ultimately able to bring three healthy children into the world, despite having been told by medical professionals early on that children may not even be a possibility for me.
Over the years, I’ve witnessed remarkable advancements in diabetes management that have transformed my life. Today, I have access to various tools and resources that make daily life more manageable. Some key advances include:
- Blood Glucose Monitoring: Continuous Glucose Monitors (CGMs) have revolutionized my diabetes management. They provide real-time data, reducing the need for frequent fingerstick tests.
- Insulin Pumps: These devices have replaced multiple daily injections for me, offering precise control over insulin delivery.
- Improved Insulin Formulations: Modern insulin formulations have a faster onset and longer duration, mimicking the body’s natural insulin response more closely.
- Diabetes Education and Support: A better understanding of the psychological aspects of diabetes management has led to more empathetic health care practices and support networks.
For me, living with Type 1 diabetes for 45 years has been a journey of resilience, and honestly, it has made me who I am, so I wouldn’t change the fact that I have lived with this chronic condition. I was diagnosed in an era of fear-based health care and limited technology. However, the progress in diabetes management has been extraordinary, allowing me to lead a more fulfilling life with no major complications to date. Diabetes care has evolved from a rigid, fear-based approach to a more holistic, patient-centered one. I’m grateful for the advancements that have made my life with diabetes more manageable and hopeful. During this Diabetes Awareness Month, I celebrate not only my strength and determination but also the community of individuals who have shared this journey with me.
I look forward to the promising future of diabetes management. Together, we can raise awareness, drive progress, and, hopefully, bring us closer to a cure for this disease that impacts so many lives.