I was due for my annual checkup but doing it during a pandemic felt indulgent, an unnecessary risk that would take resources away from truly sick people. Then two things happened.
First, while shooting an episode of my “Quarantine Cooking Show” (I am the host and editor of food video at The Washington Post), I had to sit between takes from weakness. Earlier that morning, I had been interviewed by Voice of America for a half-hour. By the end, my mouth felt like a desert.
Second, my son’s 12th birthday was in late March and I had a decision to make: take him to the doctor for his annual well-child checkup or postpone until there was a covid-19 vaccine. I studied public health in law school and had worked for surgeons general and believed, from history, that a vaccine would take a while to develop. I went ahead with his appointment rather than risk waiting many months.
His visit went well and made me reflect on the risk of having an undiagnosed condition vs. the risk of being infected by a novel virus.
Of course I first researched online my symptoms. Diabetes was among the many possibilities, but so was premenstrual syndrome. And I couldn’t possibly have diabetes, I thought. My annual blood tests with my longtime primary care physician had always shown me in excellent health. I thought that adults who contract diabetes have warnings for a while before developing the condition — which is true for Type 2 diabetes, which accounts for 90 to 95 percent of diabetes in America.
I did not know that adults could suddenly, potentially lethally, and without warning develop Type 1 diabetes, an autoimmune disease different from Type 2. This was how it happened to me. If I hadn’t gone to my doctor and started insulin injections that day, my new endocrinologist said, I probably would have ended up in the emergency room a few days later with diabetic ketoacidosis (DKA), a serious Type 1 complication in which blood sugars are so high that acids build up in the blood.
Counterintuitively, eating less can lead to higher blood sugars with Type 1 diabetes. DKA can lead to coma or death before a patient even knows they are diabetic. My attempt to reduce my own risk and strain on resources for others during a pandemic would have had the opposite effect.
All these months later, I have a new awareness about Type 1 diabetes and how to live with it. The diagnosis has me playing a daily poker game with my pancreas. But advances in diabetes treatment have given me some tricks. I have a continuous glucose monitor, about the size of my thumb, stuck to my abdomen at all times. It gives instant, constant feedback about my blood sugar levels. I check it in real time on my phone throughout the day to see how different foods affect my blood sugar, energy and mood.
In addition to all of the ways that life changed when the pandemic arrived, I’m now a food professional with a condition that requires me to be conscious of everything I eat.
And, as having diabetes of any type raises the possibility of covid-19 complications, I am a member of the vulnerable population, even though with simple treatment my blood sugar levels are now the same as a healthy nondiabetic person.
I’ve always eaten well but I haven’t always eaten in an ordered way — this can happen when you’re recipe testing all day and when you’re a single mom eating your kid’s leftovers. My eating is far more ordered now, because I know that my body is more sensitive. I’ve finally learned to separate wellness and weight and exercise and food, which are all important but very different things.
This is a strange situation for someone who once ate 2,000 foods in a week to award the Outstanding New Product awards at the Fancy Food Show. I don’t want to find out how my body would react to tasting 200 barbecue sauces now.
Type 1 diabetes was thought to emerge in childhood or adolescence — hence its nickname, “juvenile diabetes” — and not in adulthood. It is an autoimmune condition in which the body attacks and destroys the pancreas’s cells that make the hormone insulin. The immune system — which when functioning correctly fights harmful viruses and bacteria — mistakes healthy cells for pathogens. Type 1 diabetes is diagnosed by symptoms, such as the ones I had, and a blood test showing presence of antibodies that are typically produced when the autoimmune reaction happens.
With Type 1 diabetes, the pancreas produces little or no insulin, which humans need to convert food, especially carbohydrates (which range from fruits and vegetables to cakes and doughnuts), into energy. Insulin is like a key that unlocks the cells’ doors to get energy through so the body can function properly. If humans don’t have insulin, we die. People with Type 1 diabetes receive synthetic insulin through shots or a pump (a device smaller than a smartphone) connected to the body. Insulin is a treatment; there is no cure for Type 1 diabetes.
Type 2 often can be reversed or managed by improved diet and exercise, so treatment plans are different from Type 1. Type 2 usually comes on gradually with warning signs of elevated blood sugar, called prediabetes, for months or years before the disease sets in.
About 1.6 million Americans of all ages live with Type 1 diabetes, accounting for only 5 to 10 percent of diabetes cases in America, according to the Centers for Disease Control and Prevention National Diabetes Statistics Report 2020. The report does not include information on how many of those were diagnosed as adults.
“Epidemiologic data on adult-onset Type 1 diabetes are scarce . . . due to several factors, including difficulty in distinguishing diabetes, fragmented and multiple sources of health-care delivery, and increased mobility,” says Giuseppina Imperatore, branch chief of the CDC Epidemiology and Statistics Branch.
Matt Petersen, vice president for Medical Information and Professional Engagement at the American Diabetes Association, also notes the lack of information.
“My personal professional opinion is that our health system doesn’t support gathering this data as easily as is done in other countries with single payer systems where all of the data is in one place,” he says. “We rely much more on trying to put together data from many different health systems.”
Additionally, the CDC’s U.S. Diabetes Surveillance System, which shows trends in diabetes over the years, does not keep separate statistics for types 1 and 2. Because Type 1 is far rarer, “trends documented in the surveillance system may not be reflective of trends in type 1 diabetes,” according to the CDC website.
Recently, researchers have started looking at a potential Type 1.5 diabetes, called Latent Autoimmune Diabetes in Adults, as another subset. With LADA, the body gradually stops producing insulin so medication is not immediately necessary. Some experts believe LADA is a subset of Type 1, some that it’s on a continuum with Type 2, and others that it’s a condition indistinct from Type 1. According to the Mayo Clinic, adults with Type 1 or 1.5 diabetes are sometimes misdiagnosed as Type 2, because of the age of onset.
Type 1’s cause is unknown. There is no known prevention and there are no lifestyle changes that can make the body stop attacking the insulin-making cells. My endocrinologist described adult Type-1 diagnosis as “flipping a switch” — one day, the body starts attacking the insulin-making cells that it used to have no problems with. It’s particularly mystifying how Type 1 just flips on in otherwise healthy adults, without warning. Current thinking is that extreme stress or a virus may flip on the switch; but you can’t switch it off.
Every Type 1 body reacts differently to food — I wish it were as easy as “eating sugar raises blood sugar” — so at this early stage, I check my blood sugar many times a day to see how foods affect me.
Stress, lack of sleep and dehydration can also raise blood sugar. Sometimes it goes up for no identifiable reason. Sometimes it goes so low I have to eat a spoonful of honey to get it back up quickly. I inject insulin according to my blood sugar, so right now my brain is effectively my pancreas. The science shows that if I continue to manage my blood sugar, I will not experience diabetes complications or a shortened life span.
I consider myself fortunate. A century ago, before the first insulin injection, I would have been dead. And my diagnosis has helped me reorganize my life around my priorities. Like so many of us right now, I have no idea what tomorrow will bring. But wasn’t that always the case?