#dBlogWeek: More Than Diabetes

Life, an unalienable Right

Today’s Diabetes Blog Week prompt:

 Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

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I feel like I’ve been writing outside the lines all week. So, I guess I won’t stop now.

What is my passion?

Policy.

I’m a policy wonk.

I believe that politics matter because government can do good for the people—or it can do bad.

My voice and my vote is how I influence my government to do good.

Politics and government are difficult subjects to bring up in polite company. Especially these days when the country if so polarized and seems to be experiencing collective PTSD over the legitimacy of those in power.

Why is policy so important to me?

Maybe it’s because I’m the grandchild of immigrants who came to the US to escape a bloody revolution.

Maybe it’s because members of my family experienced poverty and that poverty was relieved by government programs.

Maybe it’s because I worked on education reform in the hope that my children would receive a quality public education.

Maybe because deep down I’m an idealist whose heart is still stirred by these words:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. — That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed…”

What does this have to do with diabetes?

Right now? Everything.

In Washington we have a Congress hell-bent on repealing the ACA (a.k.a. Obamacare) and replacing it with tax breaks for the rich.

In the pharma industry we have companies who one week brag to their investors how profitable their insulin business is and the next week invite diabetes patient advocates to call out PBMs (Pharmacy Benefit Managers) for price increases.

We have people turning to crowdfunding sites to pay for their medication. And when that fails, their friends and family update their pleas to pay for a funeral.

It shouldn’t be this way. That’s why policy matters to me. And that’s why I advocate for health care affordability and access.

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#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: 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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