I usually tell people my health issues started when I was diagnosed with Type 1 in 2016. But, this isn’t entirely accurate. I have what’s defined as a “slow-progressing form” of autoimmune disease. The symptoms usually slither in slowly and sneakily, making it hard to initially identify the cause.
My symptoms actually began sometime in 2015, though I didn’t recognize them as “symptoms” at the time. They presented so slowly that I easily rationalized them as normal responses to working two emotionally intense jobs in two different New York City boroughs. Over time, my energy decreased and I became less interested in socializing – something my social self usually lives for. I struggled to remember little things, like how a new pair of jeans ended up in my closet despite personally purchasing them a few months prior. “Wow, I’m losing my mind,” I’d say, then laugh it off and press on.
One Saturday during the summer of 2015, I began sweating, shaking and feeling dizzy while stalled underground and sardined in a packed Brooklyn-bound 4/5 train. It was mid-afternoon and I had stayed at work in the Bronx longer than expected, so hadn’t eaten lunch. I know that feeling well now – it was hypoglycemia of the worst kind.
When the train finally stopped, I stumbled through tunnel vision up the stairs and into the closest bodega. My next clearest memory was staring at a large cup of freshly squeezed orange juice behind the glass counter. I didn’t understand why, but I needed it. The man working the counter must have recognized that I needed it too. He stared back at my hazy, glassy eyes, his eyes then following my slow, but determined point toward the orange juice. If I actually spoke, it was incoherent. I slumped into an empty table and guzzled that juice as if my life depended on it. And, as it turned out later, it did.
I had a few episodes like this that year. Another time, I attempted to drive south to Rochester from our family cottage and ended up at the Canadian border. These episodes were infrequent enough for me to rationalize them inward, blaming them on being hungry or tired. Yet, little by little, the simplest of tasks began to feel heavier and harder to accomplish. Still, nothing appeared out of sorts because it happened too slowly to notice.
I finally saw a doctor in May of 2016 after nearly passing out in the Brooklyn IKEA. It took this happening in front of my mom, sister and now brother-in-law (a former military medic) for me to recognize something was really wrong.
After this, I started to recognize my symptoms as symptoms. By this point, I had become so grossly fatigued that walking up stairs only happened through heavy breaths and the support of death-gripping the railing. I would make full-course breakfasts for myself each morning, leave the house for work an hour later, and feel so hungry by the time I passed the corner Starbucks that I’d stop and buy a second breakfast. I couldn’t seem to eat enough food. Yet, I had lost about 25 pounds in a matter of months. I would wake myself out of sleep to pee five to six times each night. I couldn’t see straight after eating.
On my first trip to the doctor on May 18, 2016, my primary care physician attributed my symptoms to “getting older,” my vegetarian diet, and “being in your thirties now.” She ran some precautionary lab work, gave me a shot of B12 for energy and sent me on my way. It became one more reason to justify minimizing my symptoms. I didn’t notice, my friends didn’t notice, the doctor didn’t notice.
Two days later, on May 20, I received a call from my PCP informing me that my fasting blood sugar levels were 312. The normal range is 70-100. Now knowing how carbs impact my blood sugar levels, I was surely spiking into the 700-1000s post-meals. I received this call on a Friday and the doctor advised me to come back on Monday to rerun the test.
“I think you might have diabetes,” she said. Also, “It may be a fluke.” She recommended going to the hospital if I didn’t feel well that weekend, which may have been one of the most unhelpful pieces of well-intentioned advice I’d ever received. I had no idea what normal felt like anymore. And, from what I know about diabetes now, I needed to be in the hospital…like, yesterday.
Three long days later, I returned to the doctor for follow-up testing. Results confirmed Type 1, an autoimmune form of diabetes. I later discovered my diagnosis is more accurately Latent Autoimmune Diabetes in Adults (LADA), a slow-progressing form of autoimmune diabetes. LADA occurs when the pancreas stops producing adequate insulin, most likely from an “insult” that slowly damages our insulin-producing cells. It almost always occurs in people over age 30.
But, we didn’t have time to get into all that during this May 2016 appointment. In fact, I wouldn’t come to that understanding for years, as many doctors don’t know what LADA is. This visit included 15 minutes of diabetes education and eleven new prescriptions, including syringes and two types of insulin. I taught myself how to inject via a pharmacy instruction manual in my Harlem apartment that night. I spent a week dosing incorrectly, which could have hospitalized me or worse had my blood sugar been more stable.
After diagnosis, it took 3 months for me to receive a referral to an endocrinologist and a year to learn what a diabetes educator was. Most of what I know about diabetes today, I taught myself.
I also sought out much of my own support, and I’m glad I did. I quickly connected with the local chapter of the American Diabetes Association and became integrated into the Rochester diabetes community. Since then, I have participated in our local Tour de Cure biking fundraiser and have served as the Mental Health Counselor for the ADA’s Camp Aspire, a summer camp for kids living with type 1 diabetes.
My journey brought to light two major gaps in the world of diabetes management: the limited resources available for dealing with the mental health components of diabetes, and the need for more support of those diagnosed with adult-onset Type 1. I have since dedicated part of my career and practice to helping bridge the gap between the worlds of mental health and diabetes.