Bet On YOU! 4 Ways to Advocate for Yourself When You Have Diabetes

Advocate for Yourself

The Number One Thing You Can Do to Manage Your Diabetes Is Bet On You.

This is truer now more than ever. Rapid changes to diabetes technologies and medications keep coming down the pike. Mergers among healthcare systems squeeze your provider’s time and autonomy. Healthcare shortages make it harder to get ahold of your providers, see specialists, and get timely lab work or testing done.

Betting on you is pushing beyond the day-to-day diabetes decision-making into advocating for yourself in the medical field. How is your provider making decisions about your medications? What labs are they using to watch your kidney function? When is it time to see an endocrinologist?  Betting on you is a mix of trusting your instincts, gathering data, asking the right questions (to the right people), finding providers and specialists you can partner with, and understanding how medical decisions are made for (or ideally WITH) you. Here are some ways to start.

Be Part of the Data-Gathering Process

In the world of diabetes, data = decisions. Data includes lab work, other tests, blood pressure checks, and special exams as well as home glucose monitoring. Changes can be happening in your body that neither you nor your provider are aware of unless lab work or other forms of testing are done. (Think about it, I bet some of you didn’t know you had diabetes until your blood work said different). Here’s the catch. Many people with diabetes make the mistake of thinking that lab work is only for their provider. It’s not. You have to look at your lab results. Better yet, look at your lab trends (what was your most recent result as well as your last two or three results). Trends show you whether things are staying stable or changing over time. Usually, the more proactive we are in catching changes in your labs, the larger number of treatment options you have—this is true of diabetes management and diabetes complications.

TIP:  Ask your provider to order your lab work for your next appointment during your current appointment. That way you can have your labs done and available during the appointment. Knowing your lab results (and what specific questions you have about them) can go a long way in advocating for yourself and understanding your provider’s decisions.

Stay Connected to the Diabetes Community

Subscribe to diabetes magazines, podcasts, and newsletters like TCOYD®. You’ll be more likely to understand treatment options or technologies available to you. In addition, you’ll learn about experts in the medical field who can help you navigate both diabetes and the healthcare system; experts like endocrinologists, cardiologists, nephrologists, diabetes psychologists, and other critical staff such as certified diabetes care and education specialists. Staying connected to these types of resources can also help you learn more about the standard of care for diabetes. The standard of care is a set of guidelines developed by national organizations, like the American Diabetes Association (ADA). These guidelines are made by groups of experts and based on the most recent research available in diabetes care. They give your provider a framework to help you best manage diabetes and stay healthy. Everything from blood glucose goals to medications and technologies and screening for complications (and more) can be found in those guidelines.

TIP:  If you feel overwhelmed getting constant information about diabetes, focus on reading newsletters or magazines or listening to podcast episodes around the beginning of the year, when the ADA puts out its latest guidelines. Late summer/early fall can also offer helpful updates as national diabetes conferences tend to be in the summer months. Finally, conferences tailored to people with diabetes like TCOYD® can give you a ton of information in a short amount of time (and the rumor is they’re FUN!). 

Make a Plan for the “In-Between”

If you find getting ahold of your medical team is tough, you’re not alone. It’s one of the complaints I hear all the time— so many hoops to jump through (and you gotta watch your phone like a hawk so you don’t miss their call back to you!). One way to limit how often you and your medical team play phone tag is to create a clear action plan to use in-between your appointments. This action plan can include what to do when you’re sick, or have high or low blood glucose levels, or need medication changes.  And it needs to be specific. For example:

  • Increase your medication dose by X mg (or X units) every week until your glucose levels are less than 150 mg/dL OR you reach a dose of X. 
  • Call your provider if you have three or more glucose levels less than 70 mg/dL in a week’s time. 
  •  Drink 8 oz of water or sugar-free fluids every hour if you’re ill. Monitor glucose (and ketones for those with T1D) every 2-4 hours.

 More intense “in-between” plans are often needed for insulin pump users, those with other health conditions, or those with T1D. Diabetic ketoacidosis (DKA) protocols (a plan to drink extra fluids and take extra insulin), insulin pump backup plans, medication dose changes while on steroids, etc. are just a few examples of more intense action plans. The goal of any action plan between appointments is to help you achieve healthier glucose levels as well as reduce the risk of short-term complications or hospitalizations.

TIP:  Sign up for your healthcare system’s patient portal.  Not only can you see lab/test results and medications, but you can often get ahold of your provider much more quickly. In addition, if you contact your provider about a problem you’re having, you can attach pictures or downloads to your message, helping your provider make decisions. If you use a continuous glucose monitor (CGM), connect it to your provider’s clinic whenever possible.

Focus on Building a Partnership with Your Provider

You’re an expert in your experience. Your provider is an expert in the medical field. BOTH viewpoints and experiences are incredibly important.  (TRUST ME, I’ve seen folks who depend ONLY on their providers’ expertise and rarely contribute to their care plan and I’ve seen others who completely disregard their physician’s advice and create their own management plan. Neither is a great option). Creating a partnership between you and your provider is important. Ask questions! Speak up if something doesn’t make sense or doesn’t seem logical. Ask clarifying questions about medication benefits and side effects, and get timelines for when you’d expect it to work. Talk with your provider about any changes in your health.  Getting on the same page with your provider is a key part of any successful diabetes management plan.

TIP:  How you ask questions or communicate with your provider can help you get clearer answers about your treatment plan.  Make questions specific (mention your exact lab result in your question), make it personal (“If I were your brother, what you recommend?”), use open-ended questions (“How did you choose this medication for me?”), and ask for more than one referral or medication option (“What are your top 2-3 recommendations?”). Finally, ask what successfully managed diabetes looks like. This can help you and your provider get on the same page and tailor a plan to you. 



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