#dBlogWeek: What Brings Me Down

The one thing that always brings me down about diabetes

Today’s Diabetes Blog Week prompt:

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

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There’s one thing in particular that always brings me down when it comes to diabetes. That is talk of a cure.

Talk of a cure, you say? Why would that bring you down? Wouldn’t it give you hope? Hope that one day you won’t have to take pills or shoot insulin? Hope that one day you can go for a hike without worry that you’ll go low on the trail? Hope that one day you can eat a carb-heavy meal without judgement?

First of all, when people talk about a cure for diabetes they aren’t talking about me. They’re talking about resurrecting the pancreas. Regenerating a vital organ. Finding a way for the body to make insulin again.

People think they know the cure for the type of diabetes that I have. It’s lifestyle change. Lose weight. Exercise. Stay away from sugar. Eat more vegetables. Cinnamon. Yeah, right.

No consideration is given to genetic or environmental factors that trigger or encourage insulin resistance. There’s conflicting evidence on whether obesity is a cause or a co-morbidity. There’s disagreement as to whether type 2 diabetes is a metabolic disorder or an autoimmune disease. There’s more judgement than curiosity.

Bottom line is I don’t think I’ll see a cure in my lifetime. Not because I don’t think we’re capable of finding or developing a cure. But because we don’t have the social and political will to do so.

We’re stuck in the paradigm of how to treat an infectious epidemic. Find the cause and neutralize it. Make a pill or a medicine. Develop a surgery or an artificial organ. We have established industries of businesses and organizations doing this kind of work.

What we don’t have is a coordinated, science-based industry focused on what we need to change to stop the rise of chronic disease.

Such an industry would look at the rise of chronic illness in the national context of policy decisions, societal norms, and physical environment, as well as human behavior and health care practices. This is a complex and difficult undertaking. It would involve looking at everything—from the effect of chemicals in our environment to the effect of favoring feed crops and dairy in subsidized school lunch programs.

It’s unlikely that we will find a single factor that, if addressed, will solve the epidemic of chronic illness we face today. The cure will require major changes in a lot of different areas. That will require going up against a lot of entrenched and conflicting interests.

Which brings me back to the question of having social and political will.

Which I don’t think exists for the kind of lifestyle change we, as a society, need.

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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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Hey Rep. Ryan, it’s clear you don’t see me as a person

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Not about the people or healthcare, for that matter.

As I mentioned before, it’s been a couple of wild months filled with whirlwind activity on healthcare reform.

I wasn’t really surprised at the political shenanigans in Washington, DC. After all, this isn’t my first political rodeo.

But, I was surprised by how this one felt. This one was different.

This one felt…personal.

Not personal, in the sense that it is important to me personally or will have a direct effect on my life. Although both of those things are true. But personal in the sense that it felt like I, as a person who needs health care and insurance, am being targeted for punishment.

It all started with the budget

As with many things, it all started with money. In this case, the federal budget. How much tax money are the feds going to spend on health care?

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Health insurance premiums are higher. Deductibles are higher. Subsidies are going up. Not to mention the effect this is having on the budget deficit.

Budget reconciliation was the first phase of Speaker Ryan’s three-pronged approach to “repeal and replace.” And as a tactic, it was brilliant. The process moves fast. The bill must remain focused, with no “extraneous matter.” And the American Health Care Act had a fast, focused life—going from its introduction, through committee and floor debate, to its death in just four days.

But it doesn’t end there

Once the American Health Care Act was introduced and the details became clear, the circus ring turned into a boxing ring. And I, as a patient, became the punching bag.

Each day, as another detail became clear or another analysis surfaced, i felt another body blow. Another anxiety-provoking change. Another unbelievably cruel twist.

No denial for preexisting conditions was promised. But, if there’s a gap in coverage your insurance company can charge you a 30% penalty on your annual premiums. BOOM!

No more individual mandate was declared. But, if you’re an older person insurance companies can charge you 5x the premium they charge younger (presumably healthier) people. And the individual tax breaks got a lot smaller while insurance industry tax breaks got a lot bigger. BOOM!

No more funding for Medicare expansion. States will get to decide whether to include mental health and addiction services. And the CBO estimated as many as 24 million people could lose their health care insurance. BOOM!

Really? It’s okay for 24 million people to loose health insurance? It’s okay to cut health services?

I was left punch drunk.

Where did all the good stuff go?

The American Health Care Act was all about the balance sheet. How did those figures look? More money to the insurance industry. Less money to the states.

What happened to essential health benefits? You know, the part of Obamacare that says health insurance needs to cover things like check-ups, maternity care, pediatrics, and mental health. They were nowhere to be seen.

Less coverage for the individual.

Just what kind of health insurance were people going to end up with? Who knows? Surely there would be some kind of affordable health insurance, even if it didn’t cover much of the services needed to regain or maintain health.

There. Just don’t get sick and you’ll be okay.

And if you’re already sick? Well, you’ll just have to pay for it.

 

 

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

Diabetes, it’s a glass half-empty kind of thing

What if we considered the half-empty part of diabetes to be an opportunity to fill our lives with good stuff?

Every once in a while I get asked why I think people with Type 2 diabetes aren’t as active in social media as people with Type 1. We see a strong representation of people living with Type 1 in social media. Type 1s share their daily triumphs and trials, most presenting a defiant warrior-like stance in the face of “ducking fiabetes.” When we look for the Type 2 voices in social media we find fewer and they are often muted.

I used to think it was because of the age difference. Now I’m not so sure that’s the case. There are plenty of people of all ages active in social media over all.

Another thought I’ve had is that for most people with Type 2, diabetes is not central to their sense of identity. They had a whole life before diagnosis. They didn’t grow up being told their lives would be somehow limited by this chronic disease. But now it figures largely in daily routines and visions of the future.

Lately a new theory has entered my mind. It’s the idea that we tend to look at diabetes as a glass half-empty kind of thing. Much discussion about living with Type 2 diabetes centers on all the things that have to be (or should be) taken away. Carb-heavy comfort foods. Carefree daily routines. Worry-free futures that promise good health.

The emptiness of the glass shows us what is gone, never to return. There’s a sense of loss. There’s the feeling of mourning. What will replace it? Restrictions. Complicated medicine routines. Society’s blame and shame.

But what if we chose to fill that empty part of the glass with good stuff instead?