We’re proud to say that our mother ship Healthline Media has done some original research into the struggles of life with diabetes, and come up with some quite insightful results.

Healthline’s new report, “The State of Type 2 Diabetes: When Health Becomes a Full-Time Job” released in late August, reflects results of a survey of 1,570 adults with T2 diabetes and a dozen-odd in-depth interviews with patients and healthcare providers conducted in June of this year.

Refreshingly, this research bypasses traditional medical questions to “delve deeper into this world by looking at the day-to-day experiences and feelings of people who live with a condition that never gives them a day off.”

There are so many gems in this research -- in which people shared their honest and raw concerns over their daily worries, stress, lifestyle and social challenges, and financial barriers.

And don’t be fooled by the ‘Type 2’ title of this report. The biggest takeaway for myself – and probably anyone who’s typically more focused on type 1 diabetes – is that we share so much! While most people interviewed here may not be calculating insulin doses, they ARE facing numerous familiar daily struggles – including frustration over food choices, worrying about what others think and hiding their diabetes, financial woes that cut off access to meds and care, and just trying to get a decent night’s sleep (!)

As a reader of DiabetesMine, you’ll likely find yourself nodding knowingly in agreement. 

Before we dive in, note that I was an advisor to this research project, along with well-known CDE and nutrition author Susan Weiner and Stanford endocrinologist Dr. Marina Basina – also associated with Healthline.

 

Who and Why of the Survey

The survey asked millennials, Gen Xers, and baby boomers to talk about their perceptions, worries, and experiences with diabetes. Specifically, they were asked about social interactions, dating, friendships, frustrations and fears.  “Then, to put our findings in perspective, (Healthine) talked with individuals living with the condition and medical experts who have experience treating it.”

This report is part of a “State of…” series that includes expert interviews, an independent survey of 350-1,500 people (depending on the topic), and Healthline’s proprietary search and social data. Some other examples of these comprehensive overview reports include State of Fertility, State of Care, and State of Cancer.

 

Lots of Negative Feelings About Diabetes

Some of the core findings that wowed the research team – but are no surprise to those of us familiar with diabetes – were extensive feelings of failure, burnout, and fear for the future, along with lack of support and understanding. One woman noted that her family wouldn’t even say the word “diabetes.”

The four most common negative feelings reported were:

  • exhaustion
  • worry about complications
  • concern about financial costs
  • guilt for not managing the condition well

More than two-thirds of respondents said their current weight negatively affects their health. Nearly half have tried losing weight multiple times, without long-term success -- while more than 40% reported rarely exercising hard enough to break a sweat (!)

One of the biggest challenges reported — by 55% of respondents — was trouble getting a full night’s sleep. I’m sure that sounds familiar to anyone with any type of diabetes, although this report did not delve into sleep apnea as a possible cause.

Overall, people talked A LOT about feeling negatively judged, and overly burdened with the unrelenting demands of trying to be a better eater, healthier exerciser, and “compliant” medication user on a daily basis.

Right!

 

Generational Differences in Diabetes Attitudes

Some significant generational differences were also uncovered, which Healthline has focused on:

Younger people appear to have a harder time than older people with the emotional and financial challenges of type 2 diabetes. There’s still a stigma attached to the condition — and millennials bear the brunt of it.

  • Nearly half of millennials surveyed, and about a third of Gen Xers, reported hiding their condition out of worry about what others think.
  • About the same number reported feeling negatively judged by some healthcare providers.
  • Cost prevents more than 40% of millennials from always following their doctor’s treatment recommendations.

 

My Illness is Too Darn Expensive!

Speaking of cost barriers, nearly 40% of survey participants said they worry about their ability to afford treatment in the future -- and nearly 1 in 5 said cost has at times kept them from following their doctors’ treatment instructions.

According to ADA data, the national cost of T1 and T2 diabetes combined was $327 billion in 2017 — up a full 26% over the past five years. The latest tally amounted to $9,601 per individual with diabetes. Needless to say, many people can ill afford that!

Almost 30% of those surveyed said they have insurance coverage that leaves them with big bills. They also bemoaned the high costs of nutritious food, gym memberships, and exercise gear, as well as basic healthcare visits, treatments and meds.

 

Stigma, and the Never-ending Work of Diabetes

A lot of people talked about being ashamed of their diabetes, and not wanting to reveal it to others around them – most often due to the “blame the patient” attitude towards T2D.

Many also talked about feeling judged by their own doctors, and feeling constantly guilty about how they’re managing the condition.

Stress and fatigue are also huge issues. Many said they find it stressful to wait for their A1C results. And 60% feel like they’ve “failed” if the results come back too high (ya think?!).

Overall, what came through was frustration over the never-ending work of a disease that can truly feel like a full-time job.

“I just want to take a day off from diabetes” is a phrase the researchers highlighted – which is practically a rally cry of the T1D community, no?

I could go on, but the Healthline team has done such an excellent job summarizing all this, I highly recommend checking out the full report here.

As noted, a major takeaway for me is a lesson in just how much the type 1 diabetes community fundamentally has in common with those living with type 2 diabetes.

As one of our 2018 DiabetesMine Patient Voices winners who lives with T2D recently noted, “We all know that most people think we gave ourselves diabetes. Even many type 1s think that… Treating us like second-class citizens only exasperates our issues publicly.” 

Too true. I am thankful for Healthline’s efforts creating this window into the T2D world.