Diabetes Is Already Psychologically Demanding, So Cut the Stigma Too

Image: Mashable, Bob Al-Greene

When Rachel Kerstetter woke up the morning of Aug. 11, 2011, she knew something was wrong. She had risen multiple times during the night. She was extremely thirsty and her vision was blurry. She needed to go to the bathroom more often than usual.

She could trace some of the symptoms back a couple of weeks, but she thought it was just stress. She and her husband, Brad, had just married that May, and were adjusting to life as newlyweds; they were both searching for jobs right out of college; and Kerstetter was dealing with family drama, all while her father was hospitalized with cancer.

But after she experienced nausea and vomiting that particular night, Brad made her go to the doctor — and it ended up saving her life.

Kerstetter was diagnosed with type 1 diabetes, an autoimmune disease that causes a person's pancreas to produce little or no insulin — a hormone that converts sugar into the energy we need to survive. Doctors found high glucose and ketones in her urine, and after a three-night stay in the hospital, she was released with basic instructions for insulin shots, along with some dietary guidelines. For the past few years, she has used an insulin pump and a continuous glucose monitor to keep her blood sugar in check.

But even after her third "diaversary" earlier this month, Kerstetter, now 25, continues to deal with a less talked-about side effect of diabetes: stigma.

As with other diseases, such as mental illness, a general lack of information causes many to misunderstand and judge those with diabetes. People often combine the disease's different types under one umbrella term, and hold various misconceptions, like the idea that diabetes results from unhealthy eating habits.

"People assume I have type 2 because I was diagnosed as an adult, or they ask if I used to be fat and if that's why I have diabetes," Kerstetter, who weighs 95 pounds and has always been small, tells Mashable. People often ask her if she has "the bad kind of diabetes." To which she says, "There is no good kind."

Type 1 diabetes used to be called "juvenile diabetes," because diagnoses usually (but not always) occur in young children and adolescents. The term drives Kerstetter crazy.

"Many people have the idea that it can be outgrown, and I have been asked if my diabetes will ever go away when I'm 'done growing' ... [It] puts type 1 diabetes into a neat little box called 'childhood illness,'" she says.

Diabetes Insulin Pump

An insulin pump, like the one pictured, delivers insulin through a catheter In a steady dose and as directed. A small needle allows the catheter to be inserted in fatty tissue, and it's taped in place.

Image: Flickr, Alan Levine

In contrast, type 2, formerly known as "adult onset diabetes," occurs when a person's body resists the effects of insulin or doesn't produce enough insulin to maintain a normal blood glucose level. Obesity and diet, which come with their own stigmas, are risk factors that can trigger type 2 diabetes; however, genetics, ethnicity and age play a larger role. With both type 1 and type 2, a person inherits a predisposition to the disease, while environmental factors, such as viruses or obesity, can trigger it. Latinos, American Indians and Asian-Americans are more at risk for type 2 diabetes than whites are, and the risk increases with age.

There's also gestational diabetes, surgically induced diabetes, chemically induced diabetes and latent autoimmune diabetes in adults (LADA, or type 1.5).

According to the latest National Diabetes Statistics Report, 29.1 million Americans had diabetes in 2012. Of those 29.1 million people, only 21 million were diagnosed (5% of whom had type 1).

That means 8.1 million were undiagnosed. Martin J. Abrahamson, medical director and senior vice president at Harvard's Joslin Diabetes Center, attributes this to the fact that many people don't know they have type 2, as the disease often doesn't have visible symptoms.

But stigma can prevent people from getting diagnosed and seeking proper treatment, too. Some diabetics may avoid taking shots and tests in public (a very dangerous negligence) in fear of being different. Patients routinely face challenges in their social lives, prejudice in the workplace (employers may think people with diabetes are unfit to perform certain tasks) and an increased risk of depression.

And in the digital age, people easily spread misinformation and stigma online with ignorant memes, though people with diabetes often fight them with blogs and Facebook pages with memes of their own:

Clara Schneider, advisor at and a certified diabetes educator for the past 15 years, often sees stigma in her line of work. A nurse and dietitian, Schneider teaches people with diabetes about their disease, including calculating meal plans and teaching them how to inject insulin for the first time.

"In assessing my patients, I need to know [what] problems they have, including potential or ongoing stigma," she says. "Some people blame themselves for developing the disease. They often [fear that] others may think they cannot do their job, or that others may not include them."

Bennet Dunlap, 56, says he often blames himself. He was diagnosed with pre-diabetes five years ago; at 5-foot-10 and 180 pounds, he isn't obese, though the common misconception is that he, in his words, had "too many doughnuts."

"I struggle to talk about my type 2, in part because I [get] the 'it is your fault responses,' and I'm weary of that conversation," he says. Dunlap also has two kids with type 1.

"I sense the general culture is, you get a 'get well' card for a cold or broken bone, you get blamed for diabetes," he says. "Some doctors use insulin as a threat — 'take your pills or you will have to take shots' ... That medical practice stigma is the worst."

According to a January 2013 report from the Australian Center for Behavioral Research in Diabetes, health care professionals consistently rated diabetes as one of the least stigmatized health conditions. This, the report argues, proves that health professionals who do not have diabetes often are not able to perceive the stigma surrounding it, and therefore contribute to that stigma.

Like Dunlap, Schneider has witnessed professional health care providers with stigmas about diabetes, and she strives to educate them better.

"Education is the best way to overcome stigma," she explains.

Even with the abundance of stigma, there are many ways people with diabetes cope and fight back — especially in the digital age.

Kim Vlasnik, 34, was diagnosed with type 1 diabetes when she was six years old. When she went away to college, she struggled to balance "having a life" with managing her diabetes — “as is many times the case,” she says — and experienced depression. It wasn’t until years later, when she discovered the amalgam of blogs, forums and social media posts known as the diabetes online community (DOC), that she finally felt understood and supported.

“Seeing your own experiences described through someone else's words is incredibly validating and comforting, which is so important for those living with chronic illnesses,” Vlasnik says.

Now, Vlasnik is very active in the DOC, blogging about her experiences on Texting My Pancreas. She also launched the You Can Do This Project in 2011, which encourages people to share videos of their diabetes stories, so others can feel less alone.

"I love the idea of taking something that is supposed to make you feel weak, and deriving strength from that," she says. Since 2011, the You Can Do This Project has compiled more than 150 videos from adults, children and parents, with every type of diabetes. Topics range from mental health issues to personal triumphs.

“I think people don't usually realize the huge cognitive burden that comes with diabetes — it's something we worry about constantly, whether for ourselves or our loved ones ... It's a mind-numbing exercise, and it's forever. No time off for good behavior. I don't know how anyone can live with diabetes and not have it impact their mental and psychosocial health,” Vlasnik says.

Studies have shown that people with diabetes are more likely to develop anxiety disorders and depression. As a result, some may stop monitoring their blood sugar levels or revert to unhealthy diets, according to Dr. Sanjay Gupta and Everyday Health. Diabetes is "one of the most psychologically demanding of the chronic medical illnesses," according to another report.

Like Vlasnik, Kerstetter also found comfort in the DOC. It began with Twitter, where she found people talking about their diabetes and tweeting with special hashtags like #dsma, #dblog and #diabetesproblem. She felt it even helped her marriage — there was always someone online to talk to, and she didn't need to worry about talking exclusively with her husband. She blogs, too.

Both Kerstetter and Vlasnik first learned of the Dexcom continuous glucose monitor through the DOC; the device, Kerstetter says, has "saved my life more than once."

But Derek Helm, 23, doesn't use a continuous glucose monitor or an insulin pump. Having lived with type 1 diabetes for 11 years, he has a generally active lifestyle, regularly surfing and playing basketball.

"The thought of having an external organ attached to me freaks me out. I would rather take 20 injections a day," he says. He worried about having an insulin pump elbowed, bumped or ripped off.

But there's a stigma that comes with these devices, too, which influenced his decision against using them.

"Can you imagine getting naked with a girl and her reaction to seeing two machines attached to you? Not exactly a turn-on," Helm says. Even without devices, the stigma persists: Some women have asked Helm if they could "catch" diabetes from having sex with him. (Years ago, Schneider had patients who asked if diabetes were contagious; she hoped most people know by now that it isn't.)

Dexcom CGM

The Dexcom continuous glucose monitor constantly measures glucose levels, rather than just the standard finger-stick tests. It transmits data to a receiver, and alerts you when it detects low blood sugar.

Image: Flickr, Alden Chadwick

While Helm's friends are supportive, and are accustomed to him taking injections and testing his blood sugar in front of them, he says it's embarrassing in front of people he's just met. It almost always requires a long explanation.

In public places, complete strangers will give him dirty looks, and even tell him to go to the bathroom to take his injections so he doesn't "gross people out."

"I used to get very upset and take others' reactions personally, but I've learned not to. It's really a lack of education about diabetes, especially the differentiation between types 1 and 2, that causes people to react absurdly to my condition," he says.

"It's a very misunderstood disease ... More than anything, type 1 diabetics want to be just like everyone else."

To live with diabetes requires a thick skin, according to Kerstetter. Firmly held myths and misconceptions are difficult to confront, but it helps to see them as opportunities.

"Treat the diabetes problem, then explain it," she says, referencing a stranger who recently asked her about her disease while she was treating her low blood sugar. She also recommends reading up on your specific type of diabetes, so you can educate others better.

Each person interviewed for this story agrees that education and communication are the best ways to combat stigma, as difficult as it may be to open up.

"Part of what is so challenging about advocacy is the vulnerability required of those sharing their stories," Vlasnik wrote in a recent blog post. "Part of the reward, though, is that the process allows us to practice and become better human beings."


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