“A house divided cannot stand.”
I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.
It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.
Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.
Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.
The Divided House
I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.
Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.
But this community, this house I love, is a house divided.
Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:
“I’m sick of the public thinking I’m Type 2.”
“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”
“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”
“My son did nothing to deserve getting Type 1.”
“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”
“I’m not like them.”
But you are. We all live in this house.
The Numbers Don’t Lie, But They Are A Little Fuzzy
Here are the latest numbers, taken from JDRF’s General Facts page and the National Diabetes Statistics Report 2014 from the CDC. (It’s pretty. With graphics. And it’s a PDF so you can print it out and put in on a bulletin board. Or maybe that’s just me.)
Who Lives In Our House
29.1 million people have diabetes in the United States.
21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.
3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)
The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)
The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?
Our House is Getting Crowded
Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.
Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.
Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?
- Is the exterior a hodgepodge of different colors, because we couldn’t decide?
- Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
- Do we have an inviting path to greet everyone who knocks?
- Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?
I do not want a diabetes house divided.
I want a diabetes home.
Home, Sweet Home
- Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
- Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help - or hurt - people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
- Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
- Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…
Help build our community.
Help build our home.
Help make a home for everyone impacted with diabetes and let the world know that we are united.
Whatcha doing on Tuesday, May 20th?
If you answered: “Joining you at the virtual 2nd annual Diabetes Hope Conference,” I’d be thrilled. (Of course, if you had said: “Giving you millions of dollars,” I would have also been thrilled. I’m easy to please.)
The Diabetes Hope Conference began last year as a way for the diabetes community to talk about the stuff we like to keep hidden in the closet: fears about complications and how those complications aren’t brought up because of those fears. Individuals with diabetes shouldn’t have to suffer in silence or think that no one else is going through complications, burnout, or frustration with this disease. The Diabetes Hope Conference had over 250 participants last year, so the founders of this conference is on to something… and that’s where we come in.
I’m personally inviting you to join me on Tuesday, May 20th from 12 - 3pm EDT for three panels of great individuals (and one modest individual, so she won’t say she’s great…that would be me…) to talk about the questions you want answered, how to talk with your medical team, and how to share your story with diabetes.
What’s on tap?
From 12 - 1pm EDT, it’s The Doctor Will See You Now, a Q & A session with Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association. Karen Graffeo and this chick, Christel Marchand Aprigliano (ohwaithat’sme!) will be moderating, fielding questions, and perhaps even asking our own questions (I’ve promised to be wicked nice.) to Dr. Anderson.
From 1 - 2pm EDT, The Value of Blogging in Chronic Illness with Mike Lawson and Kerri Sparling will talk about blogging and mental health with Pamela Katz Ressler, co-author of the study, Communicating the Experience of Chronic Pain and Illness through Blogging.
From 2 - 3pm EDT, Dr. Jen Nash and George Simmons will converse about doctor/patient relationships and how we can keep it healthy for both in Who’s in Charge? Who Says What? And Why? This is not a reenactment of Abbot and Costello’s Who’s on First skit, but with George, I’m sure there will be plenty of laughs.
What do you need to do?
1) Register for the Diabetes Hope Conference. It’s free, it’s virtual (you can watch it in your jammies and bunny slippers or the outfit of your choice - we don’t judge!), and we want you there.
2) Ask a question in advance for Dr. John Anderson, so that Karen and I don’t end up talking about cats and toddlers and our latest hairstyles. Obviously, it should be diabetes related, but other than that stipulation, it’s fair game! Got a burning questions about the burning in your feet? Ask it. Want to understand the reasons behind why you feel horrible after a low blood sugar? Ask it.
O.K., three things:
3) Join us on May 20th. You can also ask questions via Twitter using the hashtag: #dhopeconf if you’re feeling twittery.
As it says on the Diabetes Hope Conference website:
While there is no known cure for diabetes, that doesn’t mean the diagnosis is hopeless.
Come learn just how much hope there is. (If nothing else, you can watch me make funny faces live on a computer.)
FYI: None of the panelists receive any compensation for participating. Nada. And that’s cool by me. Cool by you? Cool.