Stigma…

Stigma, it’s made up of a million microaggressions.

Stigma is a word that comes up time and again when people living with diabetes talk about their lives. Like a glucose meter or glucose tabs, stigma is a constant companion.

Sometimes it gets stated in small, subtle ways. They say things like “Do you have the easy kind of diabetes?”

Sometimes it shows up as false concern or empathy. “Can you eat that?” When what they really mean is “You shouldn’t be eating that.”

Sometimes it’s a flat out judgement. “You shouldn’t have eaten all those donuts for all those years.”

Ultimately all these kind of statements are microaggressions. And honestly most people don’t even realize they are making stigmatizing statements. So what’s the big deal? Why can’t people just shake it off?

Why can’t I just shake it off?

Because the comments add up. It’s constantly being told “I’m wrong.” “I’m broken.” “I’m a failure.” It’s exhausting. It undermines my self-confidence. And it isolates me as someone less worthy.

Stigma, it’s all around me and most people don’t even see it.

Why aren’t there more Type 2 bloggers?

People living with Type2 don’t make up 95% of diabetes patient bloggers—not even close. Why is that?

Source: Flickr (cc) couragextoxlive
Source: Flickr (cc) couragextoxlive

This is a question that comes up now and again.

There’s a thriving community of diabetes bloggers. You can find some of them here.

Most of them are living with Type 1 diabetes. That’s the the kind that used to be called Juvenile diabetes or insulin-dependent diabetes. Their blogs reflect experiences growing up dealing with the stress of having a disease that (if not controlled  well managed) could literally kill you. Some tell their story with humor. Others vent their anger at the disease, the medical establishment, and the promise of a cure in 10 years that hasn’t yet happened.

There are a few diabetes bloggers living with Type 2 diabetes. You can find some of them here.

According to the CDC there are 29.1 million people in the US, or 9.3% of the population, who have diabetes. This is a number that has more than tripled since 1980. About 95% of the diagnosed cases of diabetes are Type2.

But people living with Type2 don’t make up 95% of diabetes patient bloggers—not even close. Why is that? I think there are many reasons. And I’ll be taking a look at some pondering this question over the rest of this month.

 

November is Diabetes Awareness Month AND NaBloPoMO

Diabetes Awareness Month and NaBlogPoMo, November seems like a good time to revive my blog with 30 days of post reflection on life with Type 2 diabetes. Let’s see where this goes…

November 2014.

You see it’s National Diabetes Awareness Month. And it’s National Blog Posting Month, or NaBloPoMo.

Seems like a good time to revive my blog with 30 days of post reflection on life with Type 2 diabetes. Let’s see where this goes…

Two Tickets to Paradise

You live in Hawaii! Do you love it there?

Well…it’s complicated.

I’ve got two tickets to paradise
Won’t you pack your bags, we’ll leave tonight
—Eddie Money

It’s one of the two questions I hate the most.

You live in Hawaii! Do you love it there?

Why do I hate this question? Well…it’s complicated.

The weather is undeniably good. Averaging in the 80s Farenheit. Most days if it’s raining wait a bit and the sun will come back out and brighten things up. But it’s also one of the most expensive places to live in the country. And local folks will tell you that you can’t feed your family with a rainbow.

The beaches are inviting. But when you’re working two or three jobs to make ends meet there’s not a lot of time available to hang out at the beach. The local economy is dependent on tourism and geography means nearly everything is shipped in. This creates low-wage jobs and high prices.

I’ve met some wonderful people here who personify the Aloha Spirit. They are welcoming, generous, kind. But I have met far more people frustrated and resentful of folks from elsewhere crowding the local folks out. While I understand why some feel that way, it doesn’t make it any more comfortable to be the target of the resentment just because I didn’t grow up here.

Whenever I get asked about Hawaii there’s a split second where I have to decide. How am I going to answer? Am I going to tell the whole story, warts and all? Or am I going to mimic the tour book description? Am I completely truthful? Or do I reinforce the image they have of sunny beaches and umbrella drinks?

So it’s complicated. Hawaii is a wondrous place with amazing landscapes and kindhearted people. But it’s also a stressful place with more than its share of difficulties.

Which brings me to the other question I hate the most.

How are you doing with your diabetes?

How am I doing? It’s complicated…

 

When a Person with Diabetes Shouts in the Forest…

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

…does anybody hear?

Heading home after a week in California.

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

“You know what? I don’t give a s### about your balance sheet.” That’s the moment when everything changed. In the room and in my head. Whether I realized it or not my heart was already there.

It was during the payers (health insurance companies) panel. I stood up and yelled this out to the panel.

The reps, some with a medical background, were talking about how expensive chronic illness is. As if we, people living with diabetes, didn’t know this fact. The payers panel pointed out that the accelerating cost of  healthcare is unsustainable. As if we didn’t realize this every time we look at our personal bank accounts.

“I don’t see anybody up there (on the panel), except for the lady from Arkansas (Health Exchange), talking about patients.” I could feel the blood rushing to my face. I took a deep breath. I tried to calm down.

The tension in the room had been building.

Once again the patient was being scolded by the healthcare establishment. Do you take care of your diabetes? Do you know how expensive pumps are especially if you change them every couple of years? And with ACA the rules are changing and the future is even more uncertain.

The audience sat shifting around in their seats uncomfortably. The all too common questions rattling around it their heads. Aren’t these the companies who are supposed to help us get the care we need? Don’t they understand that we want the latest therapies and medical technology, not because it’s the latest and the greatest, but because it’s our only hope for a healthier life? We want to avoid those expensive complications. Without the illusive cure, access to the most current therapies is our only hope. We are putting our trust in the medical establishment and the healthcare insurance companies.

More than that. We’re putting our very lives in their hands.

I took another deep breath in an attempt to calm down. That was the point @SweetlyVoiced spoke up to tell her story. She let the panel know that even though they say their companies want to “get patients the care they need” that’s not what we patients are experiencing.

It was called the “Patients’ Voice Summit.” Sometimes, to be heard you got to raise your voice — even if it feels uncomfortable for everybody in the room.


DISCLOSURE: The folks at the DiabetesMine invited me to attend the 2013 DiabetesMine Innovation Summit as a winner of the Patient Voices Contest. They paid for my airfare, hotel, and meals while at the summit.