Sometimes, our healthcare providers may not fully understand what it’s like living day-to-day with diabetes. But rather than feel discouraged, people with diabetes can look at this as an opportunity to educate their healthcare team. By educating their doctors, people with diabetes can improve their own lives as well as the lives of others who will benefit from the information. Michelle Litchman is a research scientist and nurse practitioner specializing in diabetes. She recently wrote an article about the benefits of patients taking on the role of expert or teacher. She offered additional thoughts on this week’s Twitter chat, along with Jewels Doskicz, who is a registered nurse, type 1, and mother to a type 1.
Q. True or false? Your healthcare providers learn from you as an expert patient living with diabetes.
Michelle: True. There is only so much you can get from textbooks and conferences. Learning from patients changes your perspective in a good way. There are lots of people who I do and don’t actively care for that have taught me something about diabetes, influencing my practice.
Jewels: True. Effective providers don’t have a “cookie cutter” approach to management. They adapt to the unique individual.
• Definitely true. I just had an appointment yesterday and she even said, “I learn so much from you during every visit.”
• True. She has asked me questions and asked for my input about situations that are new to her.
• True. We know us better than anyone. Also, theories on managing diabetes and the “facts of diabetes” don’t always meet well.
Q. What is your most memorable diabetes teaching moment with a healthcare provider?
Michelle: A patient told my medical assistant she wished I understood how much work she put into managing her diabetes. It was a wakeup call.
Jewels: My diabetes education usually centers around exercise, diabetes technology, and how I manage type 1 diabetes along the way.
• Acknowledging that all foods are possible with the right self-care in my case. Originally, I feared sugar!
• Doctors would set my insulin dosage and expect me to follow it, not accounting for variations in daily activity. I had to tell them.
Q. What do healthcare professionals need to know about your diabetes that they don’t already know?
Michelle: When I first started out as a nurse practitioner, I needed to know how much work it took to manage diabetes. I didn’t get it. I also didn’t understand how important it was to focus on the positive, especially when people are feeling negative.
Jewels: Having another inflammatory-causing autoimmune disease in addition to diabetes is a management balancing act every day.
• I need my endocrinologist to hold me accountable for my actions.
• I wish they would know that my unique extra details are not the same as others’. They need to understand my total health (including mental) and help me plan around that.
• I wish my endocrinologists would’ve pointed me toward new ideas after years of doing the same thing without [achieving] control.
Q. True or false? My healthcare providers share diabetes hacks/tips/tricks they learned from other patients. What have they shared?
Michelle: I have shared the types of exercises my other patients with joint pain are doing.
Jewels: For those with kids: Taking a “diabetes vacation” can be a good thing. Parents still check and inject their kids as needed, but they don’t talk about numbers or anything diabetes-related for a few days.
• It varies by provider. I think some are scared of recommending off-label use [of prescription drugs] or doing things based on anecdotal evidence.
• My endocrinologists would share great success stories, but not what those people did to have that great success.
• True. Some great advice was using Leukotape K for sensors. It reduces skin irritation and the sensor lasts longer.
Q. What are your diabetes hacks/tips/tricks that healthcare providers need to know about?
Michelle: I love the hack about putting test strips in a Listerine strip container during bike rides.
Jewels: We [connect] earphones [to] our phones to silence the new nonadjustable Dexcom alarms during work or school. The loud level-10 volume is ridiculous.
• Memory foam mattresses reduce false low-sensor alarms during the night.
• [Diabetes comes with] lots of benefits. Focus, awareness of self, understanding of exercise, food, sleep, alcohol, etc. Without diabetes I’d be sick and adrift.
• I don’t think there are any benefits to having diabetes. I struggle to see the positives despite being an innately positive person.
Q. Would you ever participate in a formal program for patients to educate providers about living with diabetes? Why or why not?
Michelle: Healthcare providers can learn about the day-to-day challenges they hadn’t considered before through the Fakebetes Challenge. Collaborative learning in health is the shift we need to create an equal playing field. In closing, we all have something to give from the patient and healthcare provider perspective. Be open and respectful. Then pass great information on.
Jewels: I would. Diabetes is difficult to wrap your head around when living without it. Understanding erases barriers and creates empathy.
• I definitely would. Learning is a 2-way street. I learn more from doing than from reading. I assume my doctor is the same way.
• Yes! Sign me up now. Client-centered approach is the way to go to really improve outcomes.
• Absolutely! The difference between academic knowledge and the real world is vast, and we all have a role in helping people bridge the gap.
Join this conversation by commenting below, and join our next Q&A via Twitter on Tuesday December 20, 2016 at 9:00 p.m. ET.