My very first introduction to diabetes came as a young girl. The beginning years of my life, I was raised by my maternal great grandmother. She tested her blood sugar (begrudgingly) as little as possible and used her grandchildren as candy and Dr. Pepper mules, sneaking contraband to her while no one was looking. I loved her enormously, and would do anything she asked me to, so I happily ignored the disease which became the reigning reason why Nana couldn't have the treats she craved.
Five years after she passed away, it had probably been five years since I heard the word “diabetes”. It was August of 2009 and my identical twin sister was in an ambulance in the city we’d moved to the day before. The EMTs who responded to the call of a collapsed teenager in a college housing building spent almost an hour treating her “panic attack” before finally speaking what would become her diagnosis -- “diabetes”.
And that became our life. Sent home with packets of conflicting advice, we pieced together a narrative of how this could have happened to us, and what life was going to be like from then on. The whole time, I wished it was me instead of her. My sister, struggling to adapt to her new normal and unable to explain to us – the uninitiated, the healthy – how she was feeling, lashed out and, eventually, pulled away.
I wished it was me for three years. And then I enrolled in a clinical trial -- where I was informed that it would be me, at a probability of about 80% within five years. And so I stopped wishing it were me and started wishing it wasn't either of us. And I enrolled in the second phase of the clinical trial.
Three years of follow up tests revealed a slow progression, staving off my body’s need for exogenous insulin. From mid-2010 to 2014 I remained hopeful, but unconvinced. I started a low carb diet -- and as my blood sugars creeped slowly higher the Paleo diet. For a period of time during my masters program in 2011, I'm not sure I ate much at all. In-between diets I would break down eating ice cream for a week, or pounding beers with abandon. Abandon always tinged with guilt and shame and sadness. How much longer would I be able to ignore the food I consume? How much time did I have until I was forced to quantify every guilty morsel?
It was winter, 2014, and I had just returned from a gruelling but amazing work trip to eastern Europe. My boyfriend drove me to the Los Angeles Children's Hospital outpost for the clinical trial I had been involved with for all those years. A few months before I had received notice that my last OGTT had been unblinded because of a positive result -- over 200 mg/dl in the second hour. This wasn't the first time, but my pancreas always stepped up its game in the confirmatory test. I assumed this would be a repeat of history. I didn't feel diabetic. I was already planning where we would have lunch after the test was done. I remained apathetic throughout the needle pokes and blood draws (every 30 minutes). This time, though, the usual optimism and astonishment of the nursing staff (dwindled with each draw. In the last hour, the concern showed on their faces. This is confirmatory. You have diabetes. Do you feel ok?
In truth, I didn't feel that much different than normal, and I replied that yes, I felt fine. To myself I admitted that I did feel very sleepy suddenly and I wouldn't mind a nap, some water, and a giant cheeseburger. I nodded and resolved myself to the facts. I acted unsurprised and unfazed. Sure. Diabetes. Knew it was coming. Couldn't stop it. Thanks for your help.
Over the past two years that facade of strength has broken down. As desperate as I once was to make diabetes invisible and non-problematic in my life, I'm now accepting it's place and allowing diabetes to hurt, and be hard. And I finally understand how much of a burden diabetes was to my then teenaged sister. As an older, and better-informed “diagnosee”, I unfortunately have more perspective on how completely unfair this burden is. From the pain of the unfairness of living with diabetes, and remorse at how unable I was to support my sister, I’ve developed a plan of action to bring anthropological insight to life with diabetes. I am currently working on my PhD and I've decided to focus on the latin diabetes community, in particular those of us who are latin and also type 1. This is really a passion project for me. Before my sister was diagnosed with type 1, we all thought that you only get diabetes when you are old and eat too much sugar. All of the materials we were given in the hospital gave confusing and conflicting information (I remember a particular meltdown when one of the nutritional guides suggested that we stop eating cheese!). It became quickly apparent that the published information about diabetes was geared towards a "standard American" person, and it was jarring to have to interpret and translate this disease into a context we could begin to grapple with.
From this seed of an idea, I'm crafting a research project that will take an ethnographic look at latin type 1 lives. I'd like to be able to use my research to revise that cold welcome we had to diabetes for other latin members of our tribe. I believe that doctors, medical researchers, and medical technology developers need ethnographic research in order to create treatment plans and medicines that improve the quality of life of people with diabetes. It is my goal to add my voice to the fray, as a vector of inclusion to the diabetes advocacy community underrepresented people.
Editor's note: for more information about being diagnosed as a young adult, check out our new guide: "You've Got This: A Guide for Young Adults Diagnosed with Type 1 Diabetes", and the accompanying video series.