At almost 16 years old, Emma Heslin knew very little about any type of diabetes. But then she was diagnosed with Type 1, also known as juvenile diabetes.
“You’re like, what is that, what does that mean?” said Heslin, now a 22-year-old registered nurse. “So, you’re not going into it knowing it’s lifelong.”
She quickly learned she would have to take medication insulin and monitor her blood sugar levels for this incurable disease for the rest of her life.
“I’m a very private person and when I was first diagnosed, I was like, this is mine,” Heslin said. “And I think any diabetes diagnosis comes with shame. I felt ashamed, even though I didn’t cause it. I think there’s so much stigma.
“And I wasn’t knowledgeable about it, so I couldn’t expect others to be,” she said. “I kind of hid it, just did my thing.”
Diabetes is one of the most common chronic diseases in the United States, affecting an estimated 275,500 people in Connecticut. But patients and health providers say there’s a significant lack of awareness and knowledge among the general population — and that sometimes includes diabetics themselves and health care professionals, too.
They say all of this fuels a stigma that leaves people with any type of diabetes less willing to access health care and supportive services, or staying silent in their experiences. Advocates are trying to change that by calling for increased education and outreach efforts.
“There is a tremendous amount of illness, guilt and shame in chronic illness,” said Mary Glynn, Emma’s mother and advocate with Connecticut #Insulin4All. “That’s a challenge in our culture that we need to work on and we could support people better.”
Heslin, of Plainville, said even more awareness about the different types of diabetes can go a long way.
Type 1 diabetes happens when a person’s pancreas stops producing insulin, which the body needs to regulate blood sugar. Scientists don’t yet know all the reasons why this happens in one person over another, but there are some strong genetic and hereditary links.
Type 2 diabetes is the most common and is also a chronic lifelong disease. In this case, the body is unable to correctly use the insulin that is produced, or the pancreas cannot produce enough. Risk factors include obesity, inactivity, family history, genes, and age.
There’s also prediabetes, which is a stage in which people have high blood sugar, but can still implement changes to prevent Type 2. Gestational diabetes is diagnosed in pregnant women, and some non-related medications and treatments can also induce diabetes on a temporary or permanent basis.
Negative perceptions and judgement about these causes and effects can lead to feelings of shame or embarrassment, said Kelly Hamann, a registered nurse and certified diabetes educator, or CDE, at Hartford Hospital’s Diabetes LifeCare program.
“A lot of the conversation around diabetes, without any regard to what type, is ‘It’s your fault, you did this,’” she said. “We now know that even with Type 2 diabetes, while a lot of it is directed by lifestyle choices, genetics play such a strong role.”
All types of diabetes require different kinds of treatments and lifestyle changes, which can be challenging for patients and their families. Debby Horowitz said that’s where education programs come in.
“People get the diagnosis, they might get a pill, but they don’t know what to do,” she said. “They haven’t necessarily spoken with a registered nutritionist or dietician, and they’re floundering.”
Horowitz is the regional director of the Live Well program at Western Connecticut Area Agency on Aging in Waterbury. The agency offers weekly workshops for adults with Type 2 diabetes that teach people about healthy eating, exercise and how to read blood sugar levels.
Participants also learn what to do when they’re sick, tips on how to deal with stress, and how they can create action plans to reach their health goals. Horowitz said workshops are also held in Spanish in order to reach populations that may otherwise miss out on education opportunities.
Hamann said community support groups, which have largely become virtual during the COVID-19 pandemic, can also be a way for people to combat any lingering stigma.
“It makes you part of a shared community versus feeling like you’re alone or you’re isolated,” she said.
Diabetes treatment and technology has improved greatly over the years, Hamann said, resulting in a greater need for ongoing education. But much of that is done on an outpatient basis today.
“When I was diagnosed as a child with Type 1 diabetes, I spent at least a week in hospital, receiving intensive education from a dietician, from a nurse CDE, from pediatric endocrinologists, from everybody and anybody,” Hamann said.
“Now people aren’t spending as long in the hospital when it’s not medically necessary,” she said. “Sometimes it means that we’re scrambling to try and get patients back to see us.”
There are breakdowns across the health care system as well.
“I’ve had patients come to me, that were referred by [primary care providers], who tell me, ‘Oh, I’ve had prediabetes for 10 years,’” Hamann said. “And I look at their lab results and I see they met the clinical criteria to be diagnosed with diabetes three years prior. Functionally, three lost years.”
Hamann said breaking down the stigma and expanding education can ultimately help prevent cases of uncontrolled diabetes, which can be deadly.
“All types of diabetes are challenging to live with and to manage,” she said. “They change the way you look at your life and that’s a permanent, long-term thing. And I think that we need to be mindful of that and support people in processing that.”