thousands of shots, and the idea of recording them quickly became ludicrous.”
Manny Hernandez remembers his first low blood sugar, which happened one night while he was reading a book about diabetes and his wife was reading a book about pregnancy. “I had been recently diagnosed. At the time, I was operating under the assumption that I had type 2 diabetes so I was reading Gretchen Becker’s book about the first year with diabetes. My wife and I had also recently found out we were pregnant, so we were reading What To Expect When You’re Expecting. We were reading the baby book in bed and had just finished a section about how husbands sometimes experience pregnancy-like symptoms. Shortly after, I felt strange. I couldn’t quite put my finger on it, but it wasn’t ‘normal.’ I told my wife and her first reaction was, ‘I am sure you are just saying that because of what we just read in the pregnancy book …’ and then it dawned on her what we had read in the diabetes book about low blood sugars. She ran for the meter, and sure enough I was low—42 mg/dL.”
Sometimes the challenge for an adult diagnosed with type 1 diabetes is to make sure they get the correct diagnosis in the first place. Christopher talked about his initial diagnosis, which included the false assumption that, because of his age (30) and the fact that an in-office finger stick showed a result in the mid-300s, he had type 2 diabetes. “They sent me home with a prescription for metformin and an Accu-Chek Aviva® meter. I was told to avoid candy or sugar, but not told anything about carbohydrates.” However, weeks later, his symptoms persisted, and he continued to lose weight.
“About two weeks after my initial diagnosis, I returned to my doctor to try something else—insulin.” It wasn’t until about six to eight months later that Christopher had proper blood work done, confirming a diagnosis of type 1 diabetes.
Like Christopher, many adults who have type 1 are misdiagnosed with type 2, based on assumptions that age or weight dictates the type of diabetes. But a type 1 diabetes diagnosis in adulthood is a growing concern. Many people in their 20s, 30s, and even 40s and 50s are being diagnosed with type 1, making their adjustment to diabetes even more difficult.
“I was diagnosed at age 30, as part of my regular yearly checkup,” said Manny Hernandez, cofounder of the Diabetes Hands Foundation, a nonprofit diabetes organization. He has been living with latent autoimmune diabetes in adults (LADA) since 2002. After several months of trying different treatments for type 2 diabetes without seeing significant results, Manny revisited his doctor. “I was overweight so, when he saw an elevated fasting blood sugar, my primary care physician assumed I had type 2 diabetes. After months of trying a number of metformin-based treatments with minimal results, my doctor referred me to an endocrinologist. This time I tested positive for GAD antibodies and my c-peptide levels were low enough to make my endo conclude that I didn’t have type 2 diabetes, but instead LADA. It wasn’t until I started on insulin that it sank in that I actually had a chronic condition.”
However, it’s not just the methods of treatment that need to be integrated into a life with diabetes. Going from an injection-free lifestyle to needing several shots a day is a huge change, but often the physical demands of diabetes pale in comparison to the daily psychosocial change that people with diabetes face.
“Before diabetes, I took so much for granted,” said Manny. “I knew life without diabetes for 30 years. I didn’t really pay attention to my lifestyle and I certainly wasn’t too mindful about all the things my body does on its own. It’s such a humbling experience when you realize that, even with all the technology in the world, you still can’t get it right every time. It reminds me of when I used to scuba dive. I remember thinking about how much gear you have to wear to dive even a few feet deep, whereas a tiny fish just swims past you with nothing but his God-given body parts.
“And the change has been difficult to accept, at times. I haven’t always been a person with diabetes, but I have always been a perfectionist, and with diabetes it is very hard to remain a perfectionist without becoming frustrated,” said Manny, acknowledging the work that goes into having to think like a pancreas. “It’s hard to not feel frustrated even if you aren’t a perfectionist. One of the biggest challenges I have had to overcome in my mind is to accept that sometimes, in spite of my best efforts, I will not achieve perfection with diabetes. I try to do the best I can, every day. But the truth is, some days I do well, and some days I don’t. This disease is a one-day-at-a-time condition.”
Lindsay Swanson was 25 and living in Puerto Rico with her husband when she was diagnosed. “I received a phone call a couple weeks after a routine gynecological appointment saying that my labs were abnormal, to come and pick them up, and hand deliver them to my doctor. I had a fasting blood glucose of 399 mg/dL. I didn’t make it a rush, as nobody else seemed to make a big deal of it. I called my best friend, a nurse, and told her, as she was the only medical resource I had. She said, ‘I think you might have diabetes, you have to go to the doctor right away.’”
A diagnosis of diabetes rocks your world off its foundation and the learning curve is steep, but regardless of when you’re diagnosed, your world does right itself. It’s just different and creates an awareness of your body’s mechanics and responses that were previously unacknowledged.
Lindsay agrees. “The late-in-life diagnosis has spawned an increasing interest in total overall health and wellness, and an understanding of my body and how it works.”
People with diabetes are the original “quantified self-ers,” always tracking and dealing with a demanding disease. A plate of food is never simply food, but also morphs into this complicated math problem, taking carbohydrate content and insulin:carb ratios into account. You can’t just take a bite—you have to solve for X first. The urge to pee can’t be just that—you also need to rule out hyperglycemia, right? The goal is for people with diabetes to do this dance while remaining true to the people we were and the people we are. But what changes when the diagnosis comes later in life? Are you still the same?
“All throughout my childhood and growing up, I always wanted to be the different one. If someone said to do something, I did the opposite. If someone stated something, I’d argue, and if someone said it couldn’t be done, I’d find a way,” admitted Lindsay. “However, when I was diagnosed, it was the first time in my life when I longed to be ‘normal’ again and not be ‘different,’ which was a new and very uncomfortable position for me to be in for the first time in my life. I would say this led to initial psychosocial dysfunction, in that I was embarrassed by my type 1 diabetes and letting others know that I was different. I didn’t want to take insulin in front of anyone, I didn’t want to check my blood sugar, and I certainly didn’t want to talk about it. I entered a deep depression for about a year and a half, when I truly thought my life as I knew it had come to an end.
“The most significant social impact that diabetes has on my life is that I am no longer afraid to be the new person I’ve become in front of others. I wasn’t quite as extroverted and social before as I am now, but with type 1 diabetes being such a lonely desolate disease, the connections are lifesaving, and the only way to connect is to put yourself out there. Through these connections, I quickly learned that helping others is what empowers me most, and helps me in my own management.”
“Having diabetes and immersing myself in the diabetes community have made me a more sensitive person and forced me to confront judgments that I’ve made in the past about other people and their health,” Christopher shared, noting this as the most significant emotional change. “I know very well that I, someone who has always been naturally skinny without doing a damn thing to get that way, would certainly judge people with type 2 differently were it not something that I learned a great deal about by virtue of living in the world of diabetes. I’m much more aware of the struggles so many people go through with their health.”
Christopher had
