Going to the doctor’s office can be a stressful experience all on its own. Adding in judgment, belittling, and fearmongering can certainly derail any possible positive outcome.
This is the reality that many people with diabetes (PWDs) face, as endocrinologists and other healthcare professionals (HCPs) who are supposed to be on our team lean on scare tactics as part of their treatment repertoire.
Using fear or guilt to try to motivate PWDs was traditionally an all-too-common tactic, serving to darken the cloud of living with this disease for most people.
“Within this volatile climate (of diabetes care), unrealistic expectations for perfect self-care behavior or perfect blood glucose levels can be stirred up, leading to the thunder of ‘scare tactics,’ or using fear and guilt to try to motivate PWD,” said Dr. Barbara J. Anderson at Baylor College of Medicine, a leading expert in diabetes behavioral health for more than 3 decades. “These scare tactics backfire and usually increase the burden of self-care for PWD.”
Other experts agree that while negative messaging can sometimes prompt change on a limited and very short-term basis for certain individuals, it’s far more common that these tactics do more harm than good.
The idea behind these methods is to “scare someone straight.” Or in other words, make them realize that their existing diabetes management efforts aren’t sufficient, and if they don’t step it up, they’re heading for disaster.
This presents a “perfect storm” for the use of scare tactics in diabetes care, Anderson told DiabetesMine.
That’s because 99 percent of diabetes management is self-care done by the patient outside of the physician’s office, and the demands are extreme: control carbohydrates, exercise just so, monitor glucose constantly, refill prescriptions and dose exactly as instructed, on and on, day and day out.
Meanwhile, if daily glucose control and A1C results are not in just the right range, the PWD runs a high risk of developing long-term diabetes complications — like eye disease, heart disease, nerve and nerve damage, foot infections, and more.
If a PWD isn’t doing everything by the book and being a model patient, it’s typically been a quick and easy path for HCPs to try to scare them into being “more compliant” by emphasizing the worst-case scenarios.
We’ve heard many stories of people diagnosed with type 1 diabetes (T1D) as children some years ago, who were then shown gruesome pictures of rotting feet and amputated limbs to scare them.
But even adult PWDs today are often told to expect the worst, with little understanding or empathy about stress or genetics, or other factors that may be beyond the person’s control.
Anderson said that in her 35 years in the diabetes field, she’s never once seen fear-based communication by HCPs or family members successfully result in permanent positive change in a PWD’s self-care.
Typically, she said, that kind of talk only leads the patient to feelings of failure and hopelessness.
“Frightening or shaming the PWD only serves to sabotage the very goal that they’re trying to achieve,” Anderson said. “The PWD feels defeated and finds it harder to stay motivated, the family member worries more and tries harder to get the PWD to improve self-care behavior… the more someone escalates the fear tactics, the more the PWD feels burdened and that diabetes self-care is impossible and then, they give up.”
- the content of the message, specifically “levels of depicted susceptibility and severity” of the negative consequences
- the time delay for those consequences
- whether the focus was on one-time versus repeated behaviors
- whether core self-esteem issues or potential death were part of the fear appeal
Meanwhile, Anderson points out that very little research has been done specifically on the topic of using fear tactics around diabetes complications, within the family or with HCPs.
Two exceptions are research studies from 2008 and 2017 that respectively explore the issue of parents’ views on D-complication risk, how families can best communicate, and how adults with T1D and type 2 diabetes (T2D) discuss these complications with their healthcare team:
2008 studywas the first of its kind to ask parents of kids and teens with diabetes about what they wanted as far as information about T1D complications, and most responded that they wanted more sensitive communications and emotional support from their child’s HCP.
- The 2017 study included adults with both T1D and T2D, who indicated they wanted providers to offer “factual and complete information, specific self-care guidance and positive honesty.” They also wanted to see an approach that “lacks scare tactics and blame,” in order to “maintain hope in the face of complications.”
Beyond diabetes, there are a number of research studies that have delved into the topic of
Many experts also emphasize how important it is to provide patients with hope, and recommendations for positive actions they can take.
A lot of work still needs to be done in this area, according to Jessica Myrick, associate professor of communications at Penn State University. In a university report on the topic, she said: “We don’t understand a lot empirically about how shifting from being scared of something in a message to then being told how to fix it, or prevent it, might shift the emotional state from fear to hope.”
Scare tactics are proven to be ineffective for teenagers on a variety of topics like pregnancy prevention and drug use, and are also a lost cause for teens with diabetes, according to Marissa Town, a research nurse and certified diabetes care and education specialist (CDES) who hails from Ohio.
Town has lived with T1D herself since age 2 and has served as clinical director for the Children with Diabetes (CWD) organization that her dad, Jeff Hitchcock, founded in the 1990s. In that role, she has seen the ill effects of negative communication up close and personal.
“Scare tactics can also cause anxiety in some,” she said, noting that through the years at CWD events like Friends For Life there have been many discussions on unpleasant topics like diabetes complications that were always handled with utmost care.
While some of that can be discussed with a mixture of seriousness and levity, Town points out the event staff has reminded teens attending those sessions that “they have to take care of their diabetes to avoid these things, but it should not be looming over their heads.”
Town says she’s seen many kids and adults negatively affected when talking about those topics, let alone if the presenters were belittling or scolding them.
A key to helping someone with diabetes (or anyone) is to figure out what motivates them and help them create specific, measurable, attainable, and realistic goals. Support is crucial, too, Town said.
“It’s worth talking about how communication in a positive light versus negative tactics is much more therapeutic for everyone,” Town said.
For example, she says teenagers who are typically challenging to motivate can sometimes be persuaded with a focus on something they’re passionate about — such as sports or hobbies — and reminding them that meeting their diabetes goals can help them achieve those other goals.
“Fear just isn’t a good motivator, because it’s demoralizing and makes people feel less competent,” Weissberg-Benchell said. “A lot of it may come down to presentation and bedside manner, but it also boils down to not presenting a positive or productive path for a patient to latch on to.”
She adds that other factors matter when it comes to the negativity a scare tactic can create. Age, socioeconomic status, and racial or ethnic disparities can also activate other stigmas that exist in diabetes care.
At Baylor, Anderson recalls a high school senior football player with diabetes whom she saw during her time as a clinical psychologist at the University of Michigan. He’d lived with T1D for 15 years and had mostly in-range blood sugars over time but had started struggling with higher blood sugars a year or so prior to seeing Anderson.
He told her about being worried about life after high school, and she recalls him closing his eyes, then reopening them and looking straight at her to say: “Dr. Anderson, every morning I wake up and think that this is the day I will become blind. My parents always say that if I don’t take care of my diabetes, I will end up blind. I’m tired of taking care of my diabetes. I feel defeated, and I guess I’ll be blind anyway. Some days, it feels impossible.”
Following up, Anderson discovered that the teen’s parents thought an isolated blood sugar reading of 200 mg/dL or higher moved their son closer to immediately losing his eyesight. They’d been confused and anxious about the development of diabetes complications, and without meaning to, they’d passed that fear on to their son.
“Pulling in an experienced, empathic diabetes educator began the re-education that this family needed with respect to diabetes and complications,” Anderson said.
Many PWDs sharing their stories online have related similar experiences of feeling deflated by the use of scare tactics. Renza Scibilia in Australia, for one, writes about her diagnosis in 1998: “I had been scared into inactivity, paralyzed by the fear of what could go wrong and I felt defeated before I’d even been given a chance to form my own understanding of my own diabetes.”
Since then, she’s focused much of her diabetes advocacy on how #LanguageMatters because it can create so much stigma, inertia, and misery when used improperly.
In my own corner of the world, I’ve personally experienced the cons of scare tactics in my earlier years. Diagnosed with T1D in childhood, I grew up having all the fears and dangers of this condition drilled into my head. By the time I’d reached age 15, I had a decade of negative diabetes messaging under my belt, which led to extreme teenage angst marked by rebellion and denial, as I tried to just fit in without having everything tied to T1D.
Struggling with high glucose levels at that point in the 1990s, my pediatric endocrinologist opted to judge and scold me at every visit. My self-worth took a nosedive and a sense of hopelessness took hold, based on my belief that horrible diabetes complications were inevitable.
In short, that didn’t work for me. My diabetes management didn’t improve until my parents helped me understand that improving my D-care was tied to my ability to hang with friends, to succeed in sports, to do well in school, and eventually go on to pursue my dreams.
I can still vividly picture that endo pointing and wagging his finger at me, firmly telling me that I’d be dead, blind, or have amputations by my mid-20s if I kept up what I was doing.
He wasn’t wrong, but the tone was counterproductive and pushed me further away from where I needed to be on diabetes management.
In my early 20s, I actually did experience some diabetes complications — neuropathy in the feet and retinopathy in the eyes. My fears were becoming reality. And this reality actually helped motivate me to make some permanent changes. But it wouldn’t have happened without supportive family and a significant other who gave me hope. That was the kind of psychosocial support I needed.
I look back on my earlier teen years and wish I’d had a diabetes care team that had given me hope, instead of hopelessness. I wish they had worked to motivate me correctly, rather than focusing on scaring me. Finding peer support in the
All of that combined was so much more powerful than scare tactics ever were, at least for me.