Living with Diabetes: Four Women's Stories
Once you read these women's stories, you'll realize how much you don't know about a disease that strikes 29 million people in the U.S.
My husband and I were on the highway headed to a family gathering when I asked him to pull over. Even though the car's AC was on full blast, I could see the perspiration glistening on his forehead.
"Russ, you're sweating," I said. "Are you low?" "I don't know," he replied, looking for a place to get us off the road so he could check his glucose monitor. At the next exit Russ, who has type 1 diabetes, realized that, sure enough, his blood sugar was below normal. While I moved into the driver's seat, he grabbed the energy bar he had on hand for just this type of scenario—to give himself a fast dose of sugar.
Slight blood sugar fluctuations happen to all of us. But when you have diabetes, a disease in which the body can't properly process sugar, the ups and downs are more dramatic and dangerous. Despite their best efforts, people with diabetes often have to deal with scary sugar lows (which can cause sweating, shaking, fatigue and disorientation) and sugar highs (which may silently damage nerves, blood vessels and organs over time). The disease's physical effects are rivaled by its emotional impact, leaving so many feeling depressed about, frustrated by and blamed for their illness. The stigma surrounding diabetes is real, but it is not insurmountable. We talked to four women who have been affected by the disease in surprisingly different ways and were willing to share how they've overcome its emotional hurdles to live healthy lives.
Life with Type 1
Jen Loving, 43, of Batavia, OH, remembers when her daughter, Nora, who has type 1 diabetes, learned to draw insulin into a syringe all by herself. She was 5. By age 6 Nora was thrilled to be able to give herself a shot. "Just to see the smile on her face was amazing," Jen remembers, "but it's also heartbreaking for a kid to need that skill." Nora, now 15 years old, doesn't recall a life before the constant juggling act of managing her disease. A chronic autoimmune disorder, it occurs when the immune system attacks and damages insulin-producing cells in the pancreas. People with type 1 diabetes not only need synthetic insulin (injected through a syringe or a pump attached to the body) to process sugar, but also have to track everything they eat and the energy they expend in order to balance it by taking differing doses of the hormone.
For the Lovings, it's a way of life, especially because Nora's older sister Evelyn, 22, developed type 1 diabetes four years ago. "Yes, having a chronic illness gets in the way, but we don't let it stop us," says Jen, whose daughters have played basketball and volleyball, brought home great grades and enjoyed active social lives.
It wasn't always smooth sailing. Nora remembers a kid in elementary school who moved her chair away because she didn't want to "catch" diabetes. And Evelyn was devastated when her friends stopped talking to her after she was first diagnosed. They thought she was faking it for attention. Diabetes taught Nora and Evelyn how to advocate for themselves (like letting a coach know they need to stop practice and eat or telling a teacher they need to check their blood sugar before a test) when people misunderstand their condition or simply aren't mindful of it.
And thanks to technology, Jen doesn't have to worry about the girls or nag them about their numbers. Both her daughters' insulin pumps and continuous glucose monitors connect to an app on her phone, so she can check up on them while also giving them autonomy. "They do a really good job," she says. "But I wish they didn't have to."
"In my 20s, I competed in the plus-size pageant world, where it's okay to be big and beautiful," says former model Natasha Monique Coleman, 38, of Panama City, FL. So when she found herself steadily gaining weight, she wasn't concerned. But her attitude changed six years ago, when she couldn't fit into her seat on a plane. "I was so embarrassed," says the married mom of three, who weighed 460 pounds at the time. "That's when losing weight became an emergency to me." Her doctor agreed. Around the same time, Natasha went for a routine checkup and her A1C blood test, which measures average blood glucose control over the past two to three months, was too high, at 5.8%. She had prediabetes.
"With type 2 diabetes, your genetics set the stage and your lifestyle influences how the story plays out," says Ann Albright, PhD, RD, director of the diabetes division at the Centers for Disease Control and Prevention. Natasha's strong family history of type 2 diabetes raised her risk, but factors within her control—such as diet and exercise—were going to lead her to either develop the disease or prevent it. The only problem: Natasha had no idea where to start because she didn't know anyone focused on healthy eating or exercise in her community. "Heavy southern food is a way of life here," Natasha explains. "So I had to do a lot of research."
She replaced soda with water, cut out foods with processed sugars and stopped frying her food. In one month, she lost 42 pounds—enough to get her motivated to add in exercise. "I'd never worked out but I read about the benefits of walking, so I would park really far away from my office in the lot," she says. Once she got comfortable with that distance, she began walking a half hour a day in a park far from her home where she wouldn't be seen or judged by anyone she knew. Three months later, she was down another 67 pounds.
Although Natasha had plenty to brag about, she kept her success to herself, eating her healthy meals in the car instead of in front of friends who were enjoying fast food. "They'd never seen me making healthy choices," she says. "I didn't know how to explain it to them." But when people started noticing her weight loss, she had to.
So many women reached out to Natasha for advice that she formed a weekly support group, The Fit Club, where she would offer suggestions to women and do exercise videos with them. "That changed everything because it helped me find my calling," says Natasha, who is now a health educator with the Florida Department of Health and a master trainer select and lifestyle coach with the National Diabetes Prevention Program. After losing more than 200 pounds, Natasha no longer has prediabetes. "I'm all about prevention in my family," she says. "I don't want my kids to have to go down the same road that I did."
Fated for Type 2
The clock was ticking for Laura Owens, 41, of Knoxville, TN. "My doctor told me it wasn't a question of if I would get diabetes but when," says Laura, whose mother, grandmother and all aunts and uncles on her mom's side had been diagnosed with type 2. Despite the fact that Laura exercised regularly, ate a balanced diet and maintained a healthy weight, by the time she was in her early 20s, she had elevated A1C levels. So it was no surprise when, in her late 30s, her doctor told her she had type 2.
"A huge misconception about diabetes is that people think type 1 is more likely to be inherited than type 2," says Osama Hamdy, MD, PhD, medical director of the Obesity Clinical Program at Joslin Clinic and assistant professor of medicine at Harvard. "But the reality is that type 2 is more frequently inherited." Still, Laura was determined to fight it. "I watched my grandmother die from complications of diabetes," she recalls. Part of her grandmother's leg was amputated and she lost her eyesight before passing away. "They didn't have all the tools we have nowadays. But I knew I didn't want to die like that."
Laura had another goal: to get pregnant and have a healthy baby. So she found an endocrinologist to advise her, went on insulin and faithfully abided by a detailed plan. During her pregnancy, Laura checked her blood sugar seven to eight times a day. She also followed a prescribed diet and logged everything she ate and every time she checked her glucose, took insulin or exercised. It required an enormous amount of effort, but the payoff is that she and her husband now have a healthy 1-year-old daughter.
Laura takes pride in all she's accomplished (she even saved her log notes to show her daughter one day), but she still faces obstacles. "I have to count every single thing I put in my mouth," she says. "There's never a time I can just take a day off." Laura is also seldom free from the opinions of onlookers. "I'm open about my diabetes and there's definitely judgment from the food police, as I call them. They'll tell me that
I can't have the dessert that's served at a party, and it's very frustrating because that's not true. They know nothing about what's going on," Laura says.
Despite the frustrations, she continues to monitor her sugar levels and focus on what's important. "When I'm exercising every day," says Laura, "I think to myself, 'I'm doing this because I'm going to be around for my daughter.'"
Learning About LADA
A professional dancer and model throughout her 20s, Kyrra Richards, now 33, rehearsed for hours each day, performing at major venues such as the Rose Bowl and even traveling to Afghanistan and Qatar to entertain the troops. Shortly before the Los Angelean's 25th birthday, however, that all ended. Kyrra developed an unquenchable thirst—downing 24 bottles of water in one night—and began losing weight inexplicably. A visit to her doctor revealed that her blood sugar level was about 500 milligrams/deciliter (a normal result is less than 100 mg/dl). She was rushed to the hospital, where she was diagnosed with diabetes—but doctors were unsure which kind.
This scenario is not uncommon when people develop a less recognized type of diabetes called Latent Autoimmune Diabetes in Adults (LADA). Sometimes referred to as type 1.5 diabetes, LADA has the characteristics of type 1 in that the pancreas does not make enough insulin, but it develops during adulthood, which is more typical of type 2.
Doctors told Kyrra to stop dancing until her glucose was under control, which turned her world upside down. "Going from someone who feels extremely physically capable to someone who is physically challenged was very difficult," says Kyrra, who fell into a months-long depression. "There were many tearful nights, and it took me a while to accept that this was something I was going to have to live with—and it would completely change my life." Kyrra is not alone. "Many people with diabetes will have an episode of depression," says Brooke Baker, RN, a certified diabetes educator in Tulsa, OK. "You go through the stages of grief when you get a diagnosis, because a sense of normalcy has been lost."
The diagnosis would also change Kyrra's career. Not only did she have to take a temporary break from dancing but she also gained weight when she started taking her insulin, which made it hard to be confident at modeling auditions. In addition, she was self-conscious. "There's just a negative connotation with diabetes, and I didn't want to be associated with it," she says. "Because of that, I would either hide my glucose testing kit, or I would wait until I was alone to give myself insulin."
Fortunately, Kyrra's frustration led her to a great idea. Tired of concealing the drab pouch of diabetic supplies she always had to carry, she designed some more fashionable ones—and started selling them. Within a year of her diagnosis, Kyrra had begun working on her company, Myabetic, which makes chic cases that are sold in Target stores and online. She still loves to teach dance but now focuses on building her company, and she's excited about the future. "Myabetic has enabled me to create a diabetes label that I'm proud to represent."