I’ve had type 1 diabetes for about eleven and a half years. I was lucky in my diagnosis in that it was caught relatively early. To this day, I have (very fortunately) never had a harrowing experience with diabetic ketoacidosis (DKA), however, I cannot say the same for incapacitating hypoglycemic episodes.
In fact, I’ve had more than a few. The first time I ever had one of these terrifying lows was eight years after my diagnosis. I was in high school, home sick, during exam season. My dad was working from home, but I had been pretty tired, stressed, and moody (typical high schooler). So he left me alone for most of the day. However, he was unaware that I was sleeping through a low, one that quickly spiraled out of my control. I remember through a dream-like haze that he was on the phone with my mom, panic in his voice, fumbling with the glucagon. He had no idea how to use the thing. I don’t even remember him coming to wake me up, but I guess I had been unresponsive. When he had finally gotten a response from me, it was like talking to an alien. My words were slurred and unintelligible. He was terrified and I was too. I knew what needed to be done, even in my compromised state. I remember him handing me the needle after failed attempts of me trying to explain to him how to do it. I gave the shot to myself. I don’t know how I mustered the strength or the ability to do so, but somehow I was able to it.
A few moments later, I felt like I was waking up from a horrible nightmare, my father sitting next to me, coaxing me to drink the juice he had brought up. My mom showed up in my doorway shortly after. Both of them were watching me like hawks, I sat on my bed sobbing. I felt weak, drained, and absolutely helpless. A college acceptance packet sat on my bed, taunting me. How could I possibly think about going to college when something like this could happen again? Without my family there, who would help me?
I wish I could say I went to college and life was a breeze, but life doesn’t always work out so perfectly, especially when diabetes is involved. Diabetes is a balancing act and not an easy one. I couldn’t be the only one who thought about this balance all day every day.
And I wasn’t. A post in the CDN Chapter Leader’s Facebook page about sharing experiences with severe hypos sparked my interest. After contacting the CDN leaders in charge and talking with some Eli Lilly representatives, I was on my way to Indianapolis, Indiana, for a patient advisory board about severe lows.
The first thing we did was tour the Eli Lilly Corporate campus. It was a big, beautiful campus similar to that of a small college. As someone who has an interest working for a company such as this, I was enthralled with everything about the tour.. Now this company was more than just a logo on my insulin vials!
After the tour, we had an opening dinner. It was a chance for everyone involved in the advisory board to get to know each other in a more relaxed setting before the meetings the next day.
Across all tables and all ages, you could hear the exchange of stories about severe lows and diabetic frustrations in general. All met with good spirits and laughter, which seems to be a common theme when you get a bunch of diabetics in the same room. Instant bonds form just by sharing with people who understand each other in a way non-diabetics just can’t. The Lilly employees present were intrigued by our experiences and were impressed at the accomplishments of everyone in the room, despite living with diabetes. It was a nice feeling, having others recognize the severity of the disease we all live with and realizing that diabetics really are some extraordinary people.
The following day was full of sharing our experiences with severe lows. After a wonderful breakfast and initial introductions, we were separated into two groups: diabetics and caretakers. In our group’s room, we went through each “stage” of a severe low and the feelings associated with it. There were common reactions of frustration, fear, and failure from all of us. We felt a sense of fear, days or weeks after the incident, because our confidence in our self-sufficiency had been shattered. The worst part of an incapacitating low was surrendering treatment to someone else; the feeling that you had failed in your control of this disease. Personally, I pride myself in my own tight control, in my ability to live my life with no interference from this disease. In reality, that just isn’t how diabetes works. It was comforting, in a strange way, to hear that I was not the only one who experienced this feeling.
Is there a better way to treat these lows? That was what the advisory board was trying to figure out. Gaining our perspectives, and those of the caretakers was vital in answering this question. In getting those insights, they did something else to help us as well. They gave us the space to share our experiences and honestly, I think more than a few of us needed to know that we weren’t alone and that it wasn’t a matter of failure to control this disease.
I left this experience feeling refreshed, knowing that it’s okay to need help in handling this disease. Often, we get so caught up with trying to handle everything ourselves, because we don’t want people to pity us or think of us as ‘different’. It is a blessing and a curse that this is a relatively invisible disease. We can hide it as well as we would like, but in reality, it is best if we wear our broken pancreases on our sleeves.
Editors note: Eli Lilly is a CDN Corporate Member. Laura's travel and lodging was paid for by Eli Lilly as part of her participation on the advisory board.