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Chapter Two

Before and After

“At the time when I became sure that something was wrong, I was in Wyoming skiing. I had been losing weight and getting progressively weaker. My vision was often blurry, and I had an insatiable thirst, with a commensurate need to urinate. I remember a particular day when I was lapping a run that had a bathroom and a small snack shack near the bottom of the chair lift. I would use the bathroom, guzzle a Gatorade®, then ride the lift back up. By the time I reached the top of the lift, my mouth would be so dry that it would be sticking together and I would have to pee again. I would race down the hill and repeat the process,” said Christopher Angell, diagnosed with type 1 diabetes at the age of 30. He is describing some of the classic symptoms of diabetes—excessive thirst and excessive urination.

“My appetite was also getting progressively more heroic/disturbing. I would frequently eat five or six full meals per day, but never feel satisfied for long,” he explained. “One of the final straws came when I ate an entire package of hot-dogs.” Pause. “For breakfast.”

(For the record, mass hotdog consumption has yet to be added to the list of classic symptoms of diabetes.)

Type 1 diabetes isn’t diagnosed only in small children. Although I was diagnosed as a child, with very little recollection of life before diabetes, many others are diagnosed later in life, well into their established adulthood. Insulin vials in the fridge? Daily injections? Blood sugar fluctuations? These have always been a part of my life. All of my memories, save for a precious few, are rooted in the “after.” But I’ve often thought about what it must be like to be handed such a huge diagnosis at a time when you’re already an established adult, with a crafted sense of self. What’s it like to see the line in the sand, marking life before diabetes and then this new life after diagnosis? What’s it like to remember and to have to move forward as a person with diabetes?

Christopher and I spoke about the definitive “before” and “after” of diabetes, as integrating diabetes into his adult life was a new and prickly beast. Literally. He described to me the very first time he gave himself an insulin injection.

“I thought that having to give myself a shot was major. I couldn’t even really conceive of it. As a perfect illustration of just how poorly I understood what kind of life lay ahead of me, the first night I gave myself my Lantus® injection, I actually set up a camera to film it. I very methodically took out the pen, opened a fresh needle, and screwed it on. I dialed up two units and pushed them out to make sure the pen was primed. Then I lifted my shirt, chose just the right spot, and wiped it thoroughly with an alcohol swab. I dialed up 15 units, and, trying to be brave but also make it clear to the camera just HOW BIG A DEAL this was, pushed the needle through my skin. I pressed the button all the way in, leaving it there for 15 seconds to get every precious drop.

I don’t have the video. I had actually paused it when I thought I was pressing record, so I had videos of before and after the shot. But it didn’t matter. Soon I had given myself dozens and then hundreds and then 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 a difficult time pinpointing where diabetes changed his life the most, as it seemed to affect a broad spectrum of experiences for him. “It’s really hard to separate diabetes into different components in terms of its impact on my life. It’s such a package deal. Without meaning to sound glib, the main difference is that before diagnosis I didn’t concern myself with diabetes, and now there’s nothing that concerns me more. There is, with terribly few exceptions—exceptions I generally consider to be lapses on my part—no decision I make where diabetes is not considered, and many decisions that only concern diabetes. There has never been anything else in my life given that kind of primacy.”

But is balance sought? Achievable? Or just a strategy for schoolyard seesaws?

Lindsay has found some sense of balance, born from becoming part of her new tribe of people with diabetes. “Becoming actively involved in the diabetes community in varying roles has helped me maintain balance with diabetes. It’s a unique perspective when you’re diagnosed with type 1 as an adult, and that created an instant passion for me to connect with others who understand. Therefore, I donate my time, money, friendship, and insight, blog, fundraise, etc. This, in turn, has provided a family of the most amazing people I’ve had the pleasure of meeting and getting to know. We are connected and we should be working together to support one another.

“The life I have now is completely different than the life I had pre-diagnosis. It sounds cliché, but a good way for me to capture this is by saying that my acceptance of the hurdles we encounter in life has been the most changed,” offered Lindsay. “I began accepting these changes as our new life. I realized they are permanent, and although I can do my best to manage my disease, I can’t control it. Therefore, accepting that gave me a little bit of a release, which enabled me to be more accepting of the things that I can control, like my attitude, reactions, and the constant change that comes from living with type 1 diabetes.”

Manny admits to missing the carefree nature of life before his diabetes diagnosis, but he’s found a new mission in his life, turning disease into purpose. “I feel like I am a better and more mindful person since I became diagnosed, and I feel even more like I have a purpose in life since we started the Diabetes Hands Foundation in 2008—to bring together people touched by diabetes for positive change to make sure that nobody living with this condition ever feels alone.”

And Christopher isn’t sold on the concept of balance, but instead works in pursuit of a life worth living. He said, “I don’t know that I actually seek balance. I seek health, and I want to live a long and wonderful life, but if forced to choose between the two, I’ll take wonderful. I know that in order to do that, I need to work hard and make sacrifices that other people don’t have to make in order to have a chance at avoiding the complications that come along with diabetes, as well as minimize the daily drags and dangers of highs and lows. And I know that even if I do an amazing job of ‘managing’ my diabetes, there are no guarantees. Still, my goal is to make a life for myself that I want to live, to give myself a reason to endure everything that living with diabetes demands I endure, and then live that life. For me, that doesn’t really leave room for balance. I have only one life and my life includes diabetes, so I’m going all-in with it. I sacrifice, I live, and I celebrate the life I have as best I can, and I keep trying to find new things for which I want to live. As long as I’m able to do that, I don’t worry too much about balance.”