In the dead of summer in 1996, at age 12, I was diagnosed with type 1 diabetes. I had been performing as part of a drama camp in my hometown of Mansfield, Massachusetts. I was quite dramatically carrying around massive water bottles and taking frequent bathroom breaks (all the classic symptoms). It was August, so these practices didn’t seem out of the ordinary. It wasn’t until the cast party, when I wore a short, sleeveless red romper — I’ll never forget it — that it was clear how much weight I had lost.
Right away, my main goal was not to let diabetes interfere with my plans.
Interesting enough, diabetes eventually became a focus of my career. I had majored in English originally and then worked for three years at an IT education company. But then I realized that I wanted a career in healthcare because that was what I really cared about. This realization came from having diabetes and from the fact that other people in my family had health concerns. I realized that I was healthy despite diabetes because I was lucky — my parents were health literate and understood the illness well. Plus, I lived near the legendary Joslin Diabetes Center in Boston and could go there whenever I needed.
This was when the obesity crisis was really making headlines, so I was inspired to get a Master of Public Health to help people with diabetes who didn’t have access to the same resources that I did. So, I worked at a community health center in Boston for a childhood obesity prevention program, then the Boston Public Health Commission on a high school social determinants of health program, then Joslin Diabetes Center for 6 years in clinical research and then in technology and innovations, before joining Eli Lilly in April 2017.
I now work at the Eli Lilly Cambridge Innovation Center (the home of MIT), managing diabetes research projects. I talk about diabetes all day and I am generally comfortable now with the ups and downs (no pun intended!).
Even so, moments of lost control in diabetes are what bother me the most. Diabetes tools and technology have come a long way and are getting better every year, but it’s still helpful to remember that sometimes the biggest obstacle to dealing with what’s going on with my pancreas is to deal with what’s going on in my head.
Growing up, hypoglycemia seemed like a threat to all of my activities and to my already complicated middle school life, so I tried to eliminate its occurrence. It took a while before I got past that. Fear and avoidance of hypoglycemia, for me, are characterized less by preventing actual low numbers and more by trying to dodge embarrassment. While feeling sweaty, nauseated, shaky, and anxious are not my idea of a good time, I can handle those sensations far better than I can handle feeling humiliation or experiencing any hit to my identity as a capable, responsible person.
One particularly memorable low event occurred not long after I graduated from college. I was visiting some friends in Connecticut and we planned to run a 5K for a cancer research organization. The morning of the race was really hot, and I was not properly hydrated. I was also not properly in shape. I also decided to eat a bagel for breakfast (you know, carb loading), so I took a very large bolus dose of insulin. The race went fine (meaning I finished at some point) and my friends and I met up and walked over to a burger place to hang out and have lunch.
These were the days before CGM and I was having too much fun to stop and do a fingerstick test. I also did not take into account that my body wasn’t used to running and that I had a bagel-sized bolus of insulin on board. As I chatted happily with my friends at an outside table, I started to feel dizzy. Despite having had diabetes for many years, I attributed the feeling to needing more water.
My stomach then started to churn and I started sweating (even more). But it was hot, I reminded myself. I just needed more water. Then I started to feel faint. Fearing that I looked out of control, I slowly stood up from the table to head to the bathroom. I figured I would splash water on my face and pull myself together. I started to chastise myself for not exercising more, figuring that my past laziness was to blame for how sick I now felt.
It was only when I reached the dark bathroom, which was a single, that I considered I might be hypoglycemic. I was rarely low back then, avoiding it entirely as it was deemed dangerous and instead opting to cruise high at 200 mg/dL all the time.
Suddenly, while cursing myself for not taking better care of my diabetes and not running 20 miles every day, I started to see spots. Big, dark blotches appeared in my field of vision. I was alone, in a locked bathroom, without a glucose meter or glucose tablets, without things that I take for granted now — a CGM and smartphone — and realized that this was actually happening. I was going to go down in a heap of sweaty running clothes and pass out on the floor of a restaurant bathroom (germs!) and be lying there until my friends came to check on me.
Within milliseconds, I had run through what this would look like: their pounding on the door, their getting a restaurant manager, someone calling 911, an ambulance… NO! I could not let this happen. It would be too embarrassing. I had to reduce the embarrassment somehow. Groping for the door handle, I left the bathroom, shuffled over to the table with my arms out in case I fell, shouting my friends’ names, and exclaiming that I was about to pass out. I demanded juice. I fell into a chair. I gripped the edge of the table for dear life and panted.
The father of one of my friends is a doctor — in fact, a very prominent pediatrician. I really admire and respect him, and now he was going to know that I was a mess. Immediately, my friend was on the phone with him and he was walking through what to do to help me.
I looked around. All my friends were staring at me. A server was running over with multiple glasses of juice, which my friend then helped me to sip through a straw while her dad assured her that I would be fine. It was humiliating. As I started to feel better, the shame and embarrassment started to crawl over all over me and I wanted to disappear.
My biggest fear was that this would affect how my friends viewed me. Maybe they wouldn’t feel comfortable with my running with them anymore. Maybe they would insist on knowing when I was taking insulin and what I was eating. Maybe they would pity me. Maybe my friend’s dad would worry about the girl with uncontrolled diabetes. I feared that the message that I had sent that day was that I couldn’t take care of myself. I felt like a burden and like a “sick” person. Despite all the physical distress I had experienced, this social shame was far worse.
In reality, once I said I felt fine again, my friends completely let it go. They’ve never become the “diabetes police.” In fact, I’m not even sure they would remember this. I was extremely lucky to have friends to help me that day, to have been able to treat the low before anything serious happened, and for my friends to have a healthcare professional to call.
This isn’t the worst low that I’ve had, but it was so public and so many people were involved, that it sticks in my memory.
My takeaways were:
- If I feel strange, I need to check my blood sugar. I shouldn’t guess.
- Whenever possible, I need to plan physical activity in advance so that I don’t have a lot of insulin-on-board.
- No one is in control all the time.
We hear you. Thank you for sharing your story, Stephanie!
Stephanie Edwards has been living with type 1 diabetes since age 12. She works at Eli Lilly & Company in Cambridge, MA, as project manager for innovation and new product research.