What Diabetes Taught Me That Pharmacy School Did Not

In pharmacy school, a hemoglobin A1C (HbA1C) level of 10% would surprise my classmates. They marveled at the possibility of someone letting their diabetes get “so out of control” and wondered how it had reached that point. Ten percent was an unfathomable number in school, but many patients may consider it not unusual at all. I, Madeleine Hill, experienced this perspective firsthand when I worked in a family medicine clinic as a first-year pharmacy resident. I saw the fear in my patients’ eyes as they described their experiences with low blood glucose levels, which caused them to lose consciousness. I listened as patients articulated their struggles to afford basic life necessities, not to mention foods that constituted a healthy diet for patients with diabetes. Some patients told me about the dangerous areas they lived in where walking to their mailbox made them afraid for their safety, never mind taking a 30-minute walk each day. My patients were coming to appointments bearing greater concerns than controlling their HbA_1C levels.

Patient Case: Mr S

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When my 3:00 pm patient arrived, my last patient of the day, I felt excited to finish up the remainder of a long Monday. I gathered my pen and mask and made my way to the exam room where Mr S was waiting for me. Mr S was a patient with type 2 diabetes who wore a continuous glucose monitor (CGM) with insulin as his only medication. He was highly educated and had a fulfilling career with plans to retire at the beginning of the summer. He had been cared for by many of the family medicine residents and attending physicians before he received a referral to the clinic’s clinical pharmacist practitioner. Each of these health care professionals worked tirelessly toward his goals, but Mr S ultimately self-adjusted his regimens and ignored the recommendations offered to him by dieticians, physicians, and pharmacists. His HbA_1C level was consistently above 9%.

He sat down across from me in the exam room. I could feel his discomfort instantly as he crossed his arms and legs. I could see the lack of trust in his eyes as I asked him familiar questions about his diabetes: “What medications have you been taking?” and “How have your blood glucose levels been?”

He interrupted me: “I am on the same insulin regimens that were suggested at the last visit and have been using my Dexcom [a CGM] to check my blood [glucose levels]. My blood [glucose levels] are fine.”

Trying to break the ice, I moved on to the CGM data. We pulled up the report and I moved beside him. As the data filled the screen, showing that his blood glucose level was in the target goal only 30% of the time, his eyes flickered to the floor. “The data must be incorrect,” he muttered.

After much discussion, I learned that Mr S had self-programmed the goals in his Dexcom settings to be higher than those recommended by the American Diabetes Association. I could see this was a contentious point for him, so I trod lightly. I said, “I am curious why you set your goals higher.”

He met my eyes for the first time as he told me about his concern for low blood glucose levels due to an accident a few years prior that had caused him to lose consciousness. At that time, his wife was there to help him. More recently, however, he had been traveling alone for work. This, combined with his crippling fear of low levels, had led him to adjust his Dexcom alerts and goals.

I turned to him and said, “I understand your fear.” He tilted his head and gave me a quizzical look. I continued: “I understand because I have been there. Let me reintroduce myself. As you know, my name is Maddie. I, too, have diabetes.”

My Diabetes Journey

It was 2006. The visit to my grandma’s house usually took a quick 1-hour drive. My family would stop for a drink and snacks early on in the trip, stopping once more to use the bathroom later. This time was different. Before the car’s engine started, I had finished two 16-oz water bottles in 5 minutes. No matter how much water I drank, I could not quench my thirst. I continued to drink, and about 20 miles into the trip, we had to stop for my first bathroom break. We stopped 4 to 5 more times during the rest of the drive. 2006 was the year I was diagnosed with type 1 diabetes (T1D) and the year that changed my idea of what my life would be.

When I was diagnosed with T1D, I was 7 years old, and I was the third generation on my dad’s side of the family to be diagnosed. T1D was familiar to me because I had watched my uncle and grandpa poke their fingers and use the newest technologies on the market, but the disease was foreign to me as a patient. I was admitted to the hospital for a week while I learned what having diabetes meant. In my 7-year-old mind, sickness was an acute thing that would pass. I remember asking my mom, “When am I going to be better and not have diabetes?”

Her response rang through my head: “Oh, diabetes does not get better. You are going to have it your whole life.” At that moment, it all clicked in my head in that hospital bed. Diabetes was going to be a constant in my new life.

For those who work in the medical profession, diabetes is a common disease to manage and treat. In 2021, around 38.4 million people have been diagnosed with diabetes in the United States alone. Organizations and research companies invest in finding innovations in the care that patients with diabetes receive. Physicians are taught how to treat someone with diabetes to achieve their clinical targets.

But in all this education, health care professionals may not ever spend much time diving into the emotional toll that diabetes can take on someone’s life. Diabetes causes wear on the body as well as the mind. Our professors teach us how to treat our patients and work with them to meet their clinical goals, but it is much harder to learn how to treat them with empathy.

The disconnect between clinicians and patients can lead us to miss vital details, such as not educating patients on the importance of using new needles with each injection, priming the insulin pen correctly, disposing of expired insulin, and rotating injection sites. Such disconnect happened with many of the patients I saw in the family medicine clinic. Removing the option for patients to learn these “commonsense” skills can lead to them accidentally harming themselves or experiencing a setback in achieving their health goals.

Early on, as a patient, I also felt this disconnect. I remember my doctors saying frustratedly, “I don’t get why this is so hard for you to comprehend,” or “This is really not that complicated if you just follow the insulin regimen.” I would think, How could they understand? They don’t have this disease.

When I went back to school after being diagnosed, I instantly became the “weird” kid who went to the nurse’s office each day for my mysterious illness and got special testing privileges and candies when I “did not feel well.” I remember hating going to that office because I felt like a spectacle, and my return to class was always met with a barrage of questions from my classmates.

In high school, I switched from a public school with a nurse to a private school without one. I no longer had someone looking for me to check my blood glucose and make sure I gave myself insulin. Instead of missing 5 to 7 minutes of my lunch hour with my friends to attend to my diabetes, I would go the whole day without checking my blood glucose levels or giving myself insulin. At every visit, my doctors and specialists encouraged me only to remember to give myself insulin before I ate, increasing my insulin doses without ever considering the social factors behind my nonadherence.

As I grew older, I quickly noticed that insulin made me gain more weight, especially in my stomach. I became more involved in competitive cheerleading, and I remember coaches telling me that I needed to suck in my stomach or I’d be demoted to a base instead of a flyer. These comments, coupled with the knowledge that insulin can cause weight gain, led me to lose control of my diabetes completely. My blood glucose level stayed around 350 to 400 mg/dL most days, and I gained the weight loss I had been seeking. My endocrinologists never really caught on and focused on managing my diabetes by adjusting my insulin dosing while not recognizing the way my mental health and body image were contributing to my uncontrolled diabetes. I felt like I had tricked the system and got what I was looking for: a thin figure and not being the weird diabetic kid.

As I started college, my anxiety worsened and that, coupled with my poor diabetes management, resulted in multiple hospital visits. I had many reasons to give for my diabetic ketoacidosis (DKA) visits at appointments, from “I must’ve been sick” to “I forgot to take my basal insulin last night.” These may have contributed to DKA but were not the driving factors. Clinicians could see my HbA_1C levels and gather that I was not telling the truth, but no one called me out—except 1 clinician during pharmacy school.

The Clinician Who Changed My Outlook on Diabetes

In 2022, I was admitted to the hospital for DKA. On the second day of my hospitalization, the endocrinologist came to see me. I remember him introducing himself as he walked into the room. He casually sat on top of the heater to the right of my hospital bed. Immediately following his introduction, he looked me in the eyes and said, “You are going to kill yourself if you keep this up.” I remember thinking, That must be so easy for you to say; you have no idea what it’s like to be diabetic. Then I noticed a wire poking out from under his shirt, gracefully tucked into his pocket.

We went on to talk about everyday topics, such as where I went to school and my career aspirations, as he tried to break the ice. I remained guarded, wishing he would leave the room soon so I could finish the lecture on heart failure that I was listening to.

“I understand how hard it is to be different in a medical profession,” he said. Internally, I rolled my eyes, as I had heard countless nurses, physicians, and nutritionists say similar things. He said, “I understand that you don’t want to be observed and questioned like some medical specimen, but you are different, and that’s what can make your medical career spectacular.” He started to explain how being diagnosed with T1D in his teens had completely changed his thoughts on life and his future.

All my attention was on him. I was desperate to hear his next words.

“I knew I wanted to be an endocrinologist to help people like you and me get through life with a disease that many cannot understand,” he said.

To this day, I am his patient. His knowledge, insight, and experiences completely changed my outlook on my own experience as a patient with diabetes. I realized the impact a shared experience can have in creating the motivation to reach a patient’s health goals.

Throughout pharmacy school and as I began my professional career, I noticed my budding passion for treating patients with diabetes. In each of my practice sites, preceptors commented on how I glowed with excitement when I made a meaningful impact on patients’ lives through my interventions. I broke the barriers that many health professionals before me had established by focusing on my patients as people who were dealing with an incredibly challenging disease.

Treating Mr S

“I, too, have diabetes,” I said to Mr S. His eyes lit up and he uncrossed his legs and arms, seeming to let down his defenses. I felt a profound shift in the energy of the appointment as he opened up to someone who had been through exactly what he had been through. Conversation flowed as he described feeling the intense discomfort of hypoglycemic symptoms with blood glucose levels in the 200-mg/dL range and his frustration with what that meant. I spoke with him about my similar struggles with pseudohypoglycemia. We discussed tips and tricks that I had learned from dietitians on retraining your body to detect true hypoglycemia. He engaged with me and asked many questions along the way.

As we talked about our respective journeys with diabetes, we related to so many experiences. I shared my experience with switching to an ultralong-acting insulin to improve my blood glucose levels throughout the day and to help with my fear of overnight lows. We discussed what that change could look like for him and made a plan to switch his basal insulin to an ultralong-acting formulation. This was the first time in a while that he showed enthusiasm about and confidence in modifying his regimen. We worked together to determine skills that he could use to prevent false hypoglycemia readings overnight, such as avoiding sleeping on his CGM site.

I wish I could say that the next time Mr S came in, he was excited to share everything he had changed and how it all changed his life, but that was not the case. I received a phone call from him a few days later saying he had experienced some low blood glucose levels. When checking his CGM data, I saw that these were not true lows. I called him to check in between my scheduled patients, and he explained that he had self-adjusted his ultralong-acting insulin regimen by nearly half. We talked about self-adjustment and worked on a plan with a closer follow-up. He finished the conversation, thanking me for the controlled effect that he had seen on his numbers throughout the day with the new regimen and explaining how he had tried to incorporate more protein as a snack for his false lows. Although the follow-through was not perfect, we had established a trust that made him feel comfortable communicating with me honestly. Our shared experiences connected us and built up the confidence he needed to meet his goals—even if not in a single step, we were moving forward in little ones.

Building Empathy

Not everyone has the luxury of having a doctor who has the same diagnosis they have. However, health care professionals can gain perspective into the life of someone with diabetes in various ways. Wearing continuous glucose sensors gives you a feel for the data and battery lost on your phone, the alarms that sound throughout the day, and the errors that can happen when sleeping on the sensor.

Moreover, additional programs allow health care professionals to wear a fake insulin pump (filled with saline) to get a sense of how it feels to wear the device, remove it while showering, and fill and manage it throughout the day. There are also programs where you can get saline-filled insulin pens and experience what it is like to inject yourself with insulin, helping you to understand why some patients may be fearful of this process. Although these experiences do not replicate living with diabetes exactly, they provide a glimpse into the struggles our patients face every day. Listening to and empathizing with our patients when they express frustration or seem disengaged is also vital to overcoming a potential disconnect with them.

Although not all of us will understand exactly how it feels to have diabetes—to wear an insulin pump and hear alarms ringing day and night, to prick your finger multiple times per day or apply a CGM sensor when it falls off unexpectedly, and to inject insulin for the first time on your own—we can take the time to listen to our patients’ stories, support their goals, and validate their concerns. By doing this, we bridge the divide between patient and health care professional and treat the whole patient, not just the percentage on our screens.