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7 Strategies for Self-Advocacy in Diabetes Care

In the complex journey of diabetes management, the bridge built by effective communication between patients and healthcare providers is not just beneficial – it's essential. 

Diabetes management is hard work. For some, communicating their needs to healthcare providers is even harder. 

Despite these challenges, many individuals have found ways to overcome them, using the power of education, technology, and resilience to turn obstacles into opportunities. Taking an active role in healthcare discussions also helps ensure you receive proper, personalized care. 

"Finding my voice was a turning point in my care," said Stevie Rogers, 37, from Washington, who found out she had type 2 diabetes in October 2021. 

Alongside managing diabetes, Rogers also navigates the challenges of other chronic conditions, including polycystic ovarian syndrome and high blood pressure.

As a 31-year-old who has dealt with insulin resistance, prediabetes, and finally type 2 diabetes, I've also come to realize the importance of self-advocacy and building a trusting relationship with my doctor. Managing bipolar type 2 disorder and other conditions alongside my diabetes has underscored the necessity of having a healthcare provider who listens and considers all aspects of my health. 

Here are some top strategies for how to self-advocate and master communication with your healthcare team.

1. Educate yourself

I've learned how important it is to be active in managing my health. That’s why it's been key to communicate what I need to my doctors. 

To do this, I start digging into research articles and books from trusted sources about diabetes and how to manage it. This prepares me to ask detailed and informed questions, which makes conversations with healthcare providers more efficient.

Learn as much as you can about diabetes and its treatments. Use reputable sources online like the American Diabetes Association or books from the library. This knowledge will make you feel more confident discussing care and exploring options with your healthcare provider.

2. Find a provider who makes you feel heard

Persistence in seeking a healthcare team that aligns with your communication style and health needs is vital. I've learned not to settle for a physician with whom I don't feel comfortable or heard. My health is too important. 

Come to appointments with a list of questions. Some I tend to ask include: 

  • What's the best way for me to track my blood sugar levels?

  • What lifestyle changes can I make to better manage my diabetes?

  • Are there any specific foods I should eat more of or avoid?

  • How often should I exercise, and what types are best for me?

  • Could you refer me to a diabetes educator or nutritionist for more guidance?

  • What signs of complications should I watch out for?

  • How can I manage my diabetes when I'm sick?

  • Are there any new treatments or technologies I should know about?

  • Can you recommend any resources for support or more information on living with diabetes?

"Arriving at each appointment with questions, concerns, and a health log made all the difference," said Rodney Lewis, a 59-year-old retired Army sergeant from Quincy, Florida, who was diagnosed with type 2 diabetes in 2023. 

Like for Lewis and myself, your appointments are about your health and well-being. 

Don't hesitate to ask about patient portals or other digital tools that can improve communication between you and your healthcare team. Patient portals are particularly useful for keeping track of health measures and asking questions your provider may not have had time to cover due to time constraints. 

Importantly, if you don't feel heard or comfortable with your provider, it's okay to look for someone else. A good doctor-patient relationship is based on trust and open communication. 

3. Talk openly with your doctor

Always speak up about symptoms, concerns, and any side effects you're experiencing. For example, if a medication isn't working for you, don't hesitate to mention it. Willingness to discuss a new treatment could lead to significant improvements in your health.

Rogers shared how a conversation with their primary care provider led to a transformative change in their diabetes treatment. After enduring severe side effects from various medications, Rogers mentioned a new GLP-1 medicine, Mounjaro, during a routine visit. Their provider was not only receptive but enthusiastic about this new option. With their support, Rogers started on Mounjaro, resulting in their A1C dropping from 7.9 to 6.2. 

When I noticed my blood sugar levels were consistently higher than usual right after I took my bipolar medication (despite adherence to my diabetes management plan) I recorded it in my health diary and starred it for discussion. 

During a check-up, I brought this to my doctor's attention, expressing concern over the potential impact the antidepressant was having on my blood sugar levels. This prompted my doctor to review the medication's side effects closely, confirming that it can elevate blood sugar. 

Thanks to this open dialogue, we decided to switch to another antidepressant that had a lower risk of affecting my blood sugar. This adjustment helped stabilize my glucose levels. This is just one example of how open communication and my doctor's willingness to listen led to positive changes in treatment.

4. Maintain a health journal

A health journal can be a crucial tool in diabetes management. It provides specific information during appointments, which can lead to more customized and effective treatment plans that align with your health goals. 

“I maintain a diary tracking blood sugars, blood pressure, and specific foods I consume to monitor their impact. I note any side effects from my medications,” said Rogers. “This ensures that my provider has a comprehensive understanding, enabling them to deliver to my unique needs.”

5. Leverage technology

The digital revolution in healthcare has opened new avenues for patient-provider communication. 

Studies have found that many people with diabetes are interested in using digital tools like apps, emails, and texts to talk more with their healthcare providers outside of appointments. This can make people feel less alone and more understood as they deal with diabetes. 

"Technology helps me have a better partnership in my health and makes me more active in taking care of myself," Lewis said. 

"I've taken control by logging my health data through apps, ensuring my doctor has the full picture," Rogers added. 

This sentiment reflects a broader trend toward digital health management, highlighting the demand for innovative tools that facilitate meaningful healthcare interactions. Tools like MyChart have transformed how health data is shared, making diabetes management more interactive and collaborative. 

6. Addressing barriers to effective communication

Mark Smith, a pharmacist and diabetes educator at the University of Alabama Birmingham, emphasized the crucial need to break down communication barriers in patient care. Geographical limitations and a lack of specialists often hinder the initiation of meaningful dialogues, especially in rural settings, he said. 

"Assessing a patient's knowledge through pre-assessments can help tailor communication, making it more accessible," Smith suggested. 

Dr. Grayson Saville, a physician with Thomas Hospital in Daphne, Alabama, has a unique approach to explaining medical concepts. 

"I think the best way to communicate with a patient that has a chronic condition like diabetes is to engage them on their understanding of the disease,” Saville said. “Then you can fill in any gaps and use it as an opportunity to educate the patient on the disease process.”

By employing analogies and simplified language, Saville aims to demystify complex medical information and encourage more engaging, productive conversations. 

“For example, coronary artery disease. I tell the patient that excess cholesterol gets deposited in the artery, the “plumbing,” which narrows the pipe making it more likely to clog,” Saville said. 

Patient-centered communication not only aids in bridging understanding but also involves people with diabetes in the decision-making process. For example, Saville talks to patients about what treatments they're okay with, like choosing pills if they don't like needles. This way, people can customize care that fits their lives and make it easier to follow a health plan.

Julie Cunningham, a dietitian and certified diabetes educator, discussed additional challenges, including time constraints in consultations and the emotional impact of a diabetes diagnosis. She advocates for comprehensive support systems, emphasizing the underutilized yet crucial roles of diabetes self-management education and support and medical nutrition therapy in diabetes care. 

Cunningham's insights underscore the need for healthcare providers to actively refer patients to these resources to facilitate better health outcomes.

Furthermore, she highlights the role of emotional awareness in healthcare interactions, advocating for a more sensitive approach to patient care that acknowledges the emotional and personal challenges of living with diabetes. 

7. Seek support and share experiences

Connecting with others who live with or understand diabetes can offer invaluable support and insights. Joining diabetes support groups and exploring online communities is a great way to share experiences and tips about managing diabetes. Engaging in social networks can also bolster confidence in advocating for yourself.

Additionally, diaTribe Learn is an excellent resource for finding comprehensive information and community support specifically tailored to people with diabetes. It's a platform where you can learn new strategies for managing diabetes, engage with a community that gets it, and find practical advice for day-to-day life with diabetes.

The bottom line

Clear communication and teamwork are key to managing diabetes well. Implementing some of the strategies above can empower you to take a more active role in your diabetes care.

With diabetes education, open conversations, and digital tools, you and your providers can establish a treatment plan that fits your needs and achieve better health results.

Learn more about diabetes self-advocacy and working with your healthcare team here: