#dBlogWeek: The Blame Game

When health becomes the target of judgement

Today’s Diabetes Blog Week prompt:

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

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There’s plenty of blame to go around

There is plenty of talk about how people with diabetes feel the sting of  blame from comments and assumptions made by people outside the diabetes community.

Only this past week the internet blew up when federal budget director Mick Mulvaney in commenting on healthcare reform said, “It doesn’t mean we should be required to take care of the person who sits home, drinks sugary drinks, doesn’t exercise, eats poorly, and gets diabetes.”

Ouch. That hurt.

Also, it’s ignorant.

As the American Diabetes Association declared shortly after Mulvaney’s comments, “No one chooses diabetes.”

We also talk about the blame game that goes on with our health care teams. The very people who are supposed to be in a position to help us manage our health better can be just as negative and uninformed.

My friend Brian tells the story of how his (former) endo undermined Brian’s confidence and motivation with the message “If You Weren’t So Fat You Wouldn’t Have Diabetes.”

Before you assume that only people with type 2 experience this kind of condescending treatment from their doctors, take a look at what my friend Steven has to say about “The Blame Game.”

Language and tone are important. They can build or undermine confidence and motivation. They are so important that Diabetes Australia has even issued a position statement on the language to use when communicating about diabetes.

What we don’t talk about

But there’s a version of the blame game that we don’t talk about.

That’s the blame game that goes on within the diabetes community. When one person or group touched by diabetes snarks on another.

It’s when someone says, “I couldn’t prevent my diabetes.”

It’s when someone says, “Without insulin, I die.”

It’s when someone says, “We should change the names so that people know there’s a difference.”

These comments are often couched in terms of trying to clarify the differences between one type and another. In reality it’s a way of distancing themselves from the other.

It’s a way of saying “I’m not like you.”

It’s a way of saying “I’m better than you.”

And it’s just as hurtful, demeaning, and as undermining as any blaming comment made by someone outside the diabetes community.

Maybe even more so.

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#dBlogWeek: The Cost of Chronic Illness

$245 billion is what diabetes costs the US in a year. How did we get here? What can we do?

Today’s Diabetes Blog Week prompt:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

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$245,000,000,000

In 2012 the total cost of diabetes in the US was put at $245 billion. That’s the dollar figure the American Diabetes Association attached to the direct medical costs and reduced productivity combined.

$245 billion. Five years ago. Let that sink in for a minute. According to the 2012 CIA World Fact Book that was roughly equivalent to Chile’s total GDP.

These are costs we all, as a collective, bear.

We experience the effect of these costs as more and more of our tax dollars (and our own dollars) go to pay for health care to treat, but not cure, chronic illness.

We experience the effect of these costs in the a sluggish economy dragged down by a less productive, more disabled workforce.

We experience the effect of these cost in the sorrow of lives cut short.

How did half of all adults in the US come to live with one or more chronic illness?

There’s no one cause

It’s the result of an accumulation of decisions and actions and policies.

It’s the result of subsidizing corn and soy, but not lettuce and squash. It’s the result of eliminating physical education in school and replacing it with for-pay sport leagues. It’s the result of building suburbs for travel by car and not travel by foot or on bike.

It’s also the result of unsafe neighborhoods where people are afraid to walk the streets or let their kids go out and play. It’s the result of food deserts where it’s cheaper to buy a bag of chips than a piece of fresh fruit. It’s the result of the continual, low grade stress that accompanies stagnant wages and uncertain job prospects.

Where do we go from here?

Clearly changes need to be made.

The CDC identifies four health behaviors that can counter the risk for chronic illness. They are: regular physical activity or exercise; good nutrition; eliminate tobacco use; and limit alcohol consumption. Together these four behaviors can counter all chronic illness.

On the face of it it’s easy to assume that the individual should just adopt these healthy behaviors and everything will be good. No wonder people with diabetes, particularly people with type 2 diabetes, gets vilified.

But, it’s not that simple.

Environment plays a role in changing behavior. If the environment makes it easy to adopt healthy behaviors people are more likely to adopt and maintain those behaviors. What if we built those kinds of environments in our communities?

What if we identified, built, and maintained safe places in our communities for people to be physically active? In every neighborhood.

What if we built and maintained community gardens? In the city and the country.

What if we had community educational programs to teach health, nutrition, and job skills? And what if we offered these programs at low or no cost?

What if we had community-based campaigns to encourage people to use these places, gardens, and programs?

It won’t be cheap. But I doubt it will cost the GDP of Chile.

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#dBlogWeek: Diabetes and the Unexpected

Where the DOC has unexpectedly led me

We’re at the beginning for Diabetes Blog Week and I’m already coloring outside the lines.

Today’s prompt is called diabetes and the the unexpected. Here’s the description:

Diabetes can sometimes seem to play by a rule book that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Rule book? Random challenges? Yeah, none of that is really resonates with me. What could I have never expected from diabetes?

What I didn’t expect to find after my diagnosis was vibrant and varied diabetes online community, a.k.a. the DOC.

The DOC isn’t just the troup of patient bloggers sharing their BTDT experience. Although there are plenty of active (and semi-active) patient and parent bloggers in the DOC, some of whom are participating this week.

It’s also journalists like Wil Dubois, Mike Hoskins, and Amy Tendrich at DiabetesMine who track everything from the latest research updates to the daily challenges of life with diabetes. And the folks at DiaTribe and Diabetes Daily. These are folks who are actually subject matter experts. They’ve tracked diabetes-related news over time, so they know the history behind the current story. Some of them live with diabetes, others have experienced life with diabetes through someone close to them. Because they understand the true impact diabetes has of people’s lives they’re not satisfied with just reprinting press releases.

It’s advocates like Bennet Dunlap and Christel Marchand Aprigliano who established Diabetes PAC which not only tracks diabetes policy issues but also helps people take political action in support of better health care. And it’s leaders like Manny Hernandez who established the Masterlab program at the Diabetes Hands Foundation to train up-and-coming diabetes advocates.

It’s medical professionals who value the patient’s voice and are committed to working with (and not simply treating) people living with diabetes. Some, like Hope Warshaw even promote the usefulness of the DOC to their patients and colleagues. There’s even been a scholarly article written about the potential benefits of participating in the DOC.

It’s even industry folk who help nurture the social media presence of DOC members. The Roche Diabetes Care Social Media Summits are legend. Now Janssen hosts the annual HealtheVoices conference, this year welcoming 105 patients advocating for 35 medical conditions.

In the DOC I found a generous spirit of people willing to share. We share BTDT experience, knowledge about diabetes and healthcare, and the gallows humor that comes from knowing we won’t get out of this world alive. That weird, wonderful mix has helped me learn how to problem solve when faced with the unexpected. It’s strengthened my voice as an advocate for better health policy and coverage. And it’s given me hope that my future is filled with something more than endless plates of salad.

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There are many more people in the DOC who I’ve learned from and enjoyed spending time with. No way could I mention everyone in a single post. Know that I value your efforts and impact even if I didn’t mention you by name or organization. And I wish everyone in the DOC many more healthful, happy years in our community.

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DISCLOSURE: I attended this year’s HealtheVoices conference. Janssen Global Services, LLC. paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

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The True Cost of Stigma in Type 2 Diabetes

Published by Diabetic Connect. Because type 2 diabetes is seen as preventable, we are blamed…

Published by Diabetic Connect.

http://www.diabeticconnect.com/diabetes-information-articles/general/2624-the-true-cost-of-stigma-in-type-2-diabetes

Prediabetes? Ain’t nobody got time for that!

Prediabetes? Ain’t nobody got time for that! The Ad Council’s type 2 prevention campaign misses the mark.

In the first of its kind campaign the ADA, AMA, and CDC released a series of Ad Council public service announcements aimed at preventing type 2 diabetes. The campaign is called So…Do I Have Prediabetes?

Boy did they miss the mark.

The campaign takes on a snarky tone. Now, I’ve been known to enjoy a snarky joke as much as the next person. But this snark is aimed at the patient, that just adds to the blame and shame people living with diabetes, especially type 2 diabetes, already face.

You eat bacon? Well, don’t. It’s a variation on the “Eat 100 candy bars and what do you get?” joke. We’ve all heard the punch line: Diabetes!

Only, it’s not true and it’s hateful. And when people feel blamed for their health or shamed for their behavior that disempowers them to change. Don’t believe that? Listen to what the research of Jane K. Dickinson, CDE has to say.

And what if you’re a busy mom?

Well, this busy mom doesn’t appreciate the sentiment. Yeah, busy-ness is a common excuse. I’ll cop to using it myself once or twice. Okay! I used it for about a million years while I was in pre-diabetes.

The doctor’s response to the patient saying she’s a busy mom made me think of this:

CharlieBrownLucyFootball

Lucy van Pelt pulling the football away at the last moment yet again and the ever trusting Charlie Brown taking a tumble mid-kick.

I don’t want my doctor to be paying a cruel joke on me. And I don’t want to end up the looser in this scenario.

But more damning is the image that comes to my mind when I reflect on what the busy mom says. Her distress is real. And yet her words come off more like this:

Ain't nobody got time for that!

And this is just plain wrong.