The KISS of Diabetes Advocacy

Find your excuse.

  • I don’t have enough time to commit to something that big.
  • I have no idea where to even begin.
  • I won’t make a difference.
  • I’m too shy to speak up.
  • I’m afraid I’d say something stupid.
  • Someone else will do it. 

Do any of these reasons not to advocate for diabetes hit home with you?

Once upon a time, I believed them all. (Well, except for the shy excuse. I’m a little bit of an extrovert. Just a tiny smidge.) Advocacy was this nebulous concept that was done by people who knew what they were doing and that was perfectly fine with me. Let the experts advocate for diabetes. Good for them! They would get something done and I would reap the benefits.

The truth is so very different. Those excuses listed above are balloons… and I am going to help you pop every one of them and show you The KISS of Diabetes Advocacy.

(No, this is not The KISS of Diabetes Advocacy.)

kiss-1800-1396461735

Let’s get The KISS out of the way first.

The KISS of Diabetes Advocacy is this:

Keep

It

Simple

Sweetheart (or Stupid, but you’re not, so it’s sweetheart, so there.)

Keep that in mind while we pop the balloon excuses…

I don’t have time to commit to something that big.

You can be a diabetes advocate in less than a few minutes a day. We showed you that it can be done in about two minutes (or even less.) At the MasterLab held at CWD’s Friends for Life, a three step plan was laid out for you on one webpage. Click, click, click and you’re set with the Diabetes Action Hub. Three quick things to start.

(Take a survey, send a quick email to your representative about two bills that will help all people with diabetes, and sign up to get notified about advocacy actions that you can take in the future.)

You do what you can. No one is asking you to chuck your job and go on the road, stumping daily for diabetes awareness or reimbursement. No one is asking you to spend your days in a monkey suit, waiting in corridors to spend a few minutes with an aide for your Congressperson. Pick what is important to you, but don’t do nothing. You can make a difference in a few minutes per day.

I have no idea where to begin.

The American Diabetes Association does an outstanding job with explaining how easy it is to advocate for diabetes. It’s a great primer if you have no idea where to begin. It’s a great starting place. If you don’t even know why you should advocate. you can look at the list of federal priorities that the ADA has set out to accomplish this year (all very ambitious, and all need help from people like us).

I won’t make a difference.

Think so? You do. Every letter that is written, every call that is made, every tweet, every visit raises awareness of what diabetes is, how it impacts us, and what we need to be healthy. We saw the difference over 300 of us made when we voiced our comments on the accuracy of blood glucose meters to the FDA. Can you imagine what 3,000 comments could do? 30,000?

In the 80s, I threw my insulin, syringes, meter, and strips in my backpack and tra-la-laed my way down the halls of my school. Needed to check? I pulled out my meter. Needed to take an injection? Pulled out a syringe and did it myself.  To do that today would have the administration of any school screaming, some more loudly than others. Imagine not being able to have anyone besides a nurse administer insulin or glucagon to your child or someone you love in a school. It was happening in California. Advocacy changed that. It took eight years, but now trained personnel can help in schools without a nurse present.

Every time you share the difference between Type 1 and Type 2 diabetes, or explain what insulin does, or why you can eat that donut, you are advocating for diabetes awareness. Want to rattle off some statistics? Easy. Here is the full list, but you can memorize this one from the CDC:

If current trends continue, 1 of 3 U.S. adults will have diabetes by 2050.

If that doesn’t freak you out, I’ve got others. Let me know and I’ll send them to you.

Talk about diabetes. The one smart thing I said at MasterLab was this: “Advocacy begins with you.” And by you, I mean you.

I’m too shy to speak up.

Then don’t speak. Write your congressman. Write an article in your community newspaper. Tweet important information and disseminate advocacy actions to others. Do art that can be used in presentations at hearings and meetings that make an impact.

Diabetes Art Day images surrounded Manny Hernandez and me at the Diabetes Technology Society meeting last September. It made an impact.
Diabetes Art Day images surrounded Manny Hernandez and me at the Diabetes Technology Society meeting last September. It made an impact.

People who advocate “behind the scenes” do important things. Put a walk team together. Help raise funds for research or technology that will help improve the lives of people with diabetes. You don’t have to shout with a megaphone to get your voice heard.

I’m afraid I’ll say something stupid.

Know what’s stupid?

Not saying anything and accepting the status quo. 

Was that blunt? As blunt as my lancet is right now because I haven’t changed it in a while.

If you get the facts, understand the players, and find out what your passion is, you won’t be stupid and nothing out of your mouth will be stupid.

What bothers you most about diabetes? Good. That’s your passion.

Then google information about your passion and get information about the facts surrounding it and the key players. (And by players, I mean your fellow advocates or advocacy groups and the people you will need to influence to change the status quo.)

Once you’ve got that, work with your fellow advocates to change the status quo.

Someone else will do it.

That was my biggest balloon excuse. It was so big that it carried me up into the stratosphere for years and years. And then something happened.

I got angry.

And then…

I got angrier.

And then…

I recognized that even people who should know the difference didn’t.

There was no moment in which I decided to advocate. When I realized that I needed to speak up for myself and then for those who couldn’t speak for themselves, it was a no brainer. There is so much to do in the world of diabetes advocacy, so much status quo that needs to be shaken, that I now wish I could do it all.

Which brings me back to The KISS of Diabetes Advocacy. (You thought I had forgotten, right?)

Keep It Simple, Sweetheart.

Start small. Sign up for advocacy alerts. Pick something that that you want to see change. Send an email or a tweet. Ally yourself with others who share that want for change.

If that all feels good, then flex your wings and step outside your comfort zone. I quaked in my heels as I stood in front of a panel of people in Bethesda last year, asking the FDA representative what it would take for them to pull an inaccurate meter or strips off the market. My heart pounded in my throat (where it shouldn’t ever be) and I was sweating, but I wanted to let them know I wasn’t accepting the status quo.

We can all be advocates. Come join us. We need your help.

2nd Annual Diabetes Hope Conference

Header-Image

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?

Two things:

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.