Diabetes Turns a Doctor Into a Patient
Her story: “With my heart pounding, I did my first finger stick on myself”
The first time I gave myself an insulin injection, I was 26 years old, sitting in the Stony Brook endocrine clinic in my green scrubs. The attending physician, a doctor whom I knew well from the many Sunday afternoons I had spent managing our student-run free clinic, showed me how to screw the needle onto the insulin pen, dial out my first 10 units of Lantus, and grab a roll of my flesh to inject into. Five minutes later, I was walking out into the large parking lot surrounding the office building, with insulin pens, needles, blood glucose meter, lancets, and glucagon rescue kit filling my shoulder bag. I slipped into the driver’s seat of my car and took a deep breath. There was no way that I could do this for the rest of my life. And my body started to shake with tears.
There had been months of symptoms leading up to that moment of grief in the parking lot. I had spent all of residency interview season downing glass after glass of water and searching for the nearest bathroom. For much of my life, my family had jokingly called me a “camel,” because I drank very little and peed even less frequently. But that was definitely not me anymore. I started to get up in the middle of the night because I was so thirsty, and I began to joke that maybe I had diabetes. A few weeks later, my clothes started to hang differently on my thinning frame. I didn’t want to run to the doctor’s office, though, and be that “crazy medical student” who thought she had any and every disease imaginable. So I kept drinking gallons of water, running to the bathroom a dozen times a day, and agonizing over my rank list for residency.
A few months went by and I was heading back to Long Island for the last three months of medical school. I visited my parents for a night. As I drank a full pitcher of water at dinner, my mom noted how much thinner I had become. Her concern was palpable to me. I had been religious in my daily one-hour gym workouts since my first year of college, but I had never lost much weight. It seemed as if something had changed.
Next, I volunteered for an afternoon shift at our student-run free clinic. I remember debating in my head whether it was worth doing a finger-stick glucose reading on myself. I asked one of the first-year medical students to do it, but she laughed at me, apparently uncomfortable. So, with my heart pounding, I did my first finger stick on myself. I’ve probably done about 3,000 finger sticks since then. The block numerals of the meter flashed “371” before turning off. And that was how I found out that I had diabetes—a random glucose reading over 200 mg/dl with symptoms. I definitely did not know what to do with myself in that moment. I went outside and called my mom and my boyfriend, and told them what the meter had said.
I am pretty sure that I couldn’t bring myself to use the word “diabetes.” Putting a name to my symptoms seemed way too real. It was as if I was looking at someone else, who was talking about someone else. I remember the wind of the February day whipping around me; I had left my coat inside. In my head, I was definitely telling them about someone else—a patient, perhaps one whom I had just skillfully diagnosed with diabetes. Then I went back inside and saw patients for the rest of the clinic afternoon.
There are so many other stories that I could tell about my first two years living with diabetes. There was the doctor at student health services who, two days after I took that first finger stick, gave me a prescription for metformin and told me to lose weight. There was the first time I felt the shaky giddiness, nausea, and slowed thinking that warn me of hypoglycemia (low blood glucose). I was in the middle of the Stony Brook cafeteria and downed an entire bottle of orange juice. A few hours later, my meter read a value over 300. I quickly learned how to correct for hypoglycemia without making myself grossly hyperglycemic. I count the carbohydrates in everything that I put in my mouth. I will have to do this for the rest of my life.
During those first months, there was the diabetes educator, herself a young woman with diabetes, who spent many hours teaching me how to insert her company’s insulin pump infusion set into my abdomen and how to manage its many intricate settings. There was the Saturday afternoon when I taught my boyfriend how to load my pump with insulin and insert an infusion set—and neither of us could stop crying. I put a new infusion set into my abdomen every three days. It now takes me about two minutes to do the entire process. But some days, I still end up with blood dripping down my stomach or a faulty insertion site that requires a do-over.
Then, finally, about four months after my diabetes diagnosis, there was the day that I met all of my new co-residents for the first time. I realized that they had never known me before diabetes. And I missed that person.
The moment I sat in my car in the parking lot of the endocrinologist’s office is, in many ways, my defining moment of diabetes. I grieved for an ease of life that I hadn’t even yet realized I had lost. I grieved for the nights that I would get home from clinic at 10 p.m. and still have to change my insulin pump insertion site; for the bags of granola bars packed for every vacation; for the calluses that have formed on the sides of my fingers. I grieved for the bowls of pasta and for the pizza platters. I grieved for dresses, which are so much harder to wear with an insulin pump strapped to my thigh. I grieved for the thought of a high-risk pregnancy in my future. It is in these ways that diabetes is a part of my everyday reality, much more so than my A1C or urine microalbumin (a test of kidney function) or most recent LDL cholesterol level.
I sit in clinic, now, across from a patient with diabetes, and try to figure out a way to help her live her life with diabetes. I suggest eating that sandwich with only one piece of bread; doing her finger sticks on the side of her fingers, where it’s likely to hurt less; and keeping juice boxes by her bed, as a way to stave off occasional hypoglycemia.
We talk all the time about a patient-centered approach to medicine. The most patient-centered approach to diabetes is one that recognizes how much diligence it takes to be a “well-controlled” person with diabetes. It is endless, unforgiving, constant, and it goes on forever. I deeply respect my patients who manage their diabetes well, and I empathize with those who cannot.
There is no easy end to this story except, perhaps, that this is the end of the beginning. I live with diabetes every day.
Sarah Eisenstein Stumbar, MD, MPH, is a primary care doctor in residency at Montefiore Medical Center in the Bronx, N.Y.