Is knowledge power? The pros and cons of diabetes self-education
Two years ago in the middle of her busy life as a double major art student, Devon Inglee started feeling sick. She googled her symptoms (thirst, fatigue, frequent urination) and came up with type 2 diabetes. As a slim, active college student the diagnosis didn't seem to fit, but when she went to the health center at school, the doctor put her on metformin and gave her a box of test strips. "I didn't get any better," she says. "So after two weeks I went back to the doctor and said, 'what's wrong? Why can't I fix this?' The dietician told me to restrict my food." Inglee got down to 97 pounds before she was correctly diagnosed with type 1 diabetes.
Certified diabetes educator (CDE) Lyndsay Riffe says, "Unfortunately, patients today are still being misdiagnosed with the type of diabetes they have, which can be dangerous. Self-education can provide a better understanding of the different types of diabetes, which can then push the patient to approach their physician with appropriate questions." Rachael Garlinghouse has type 1 diabetes and always goes to her medical appointments armed with a list of questions. "I value the opinions and experience of my health care professionals," she says. "However, at the end of the day, it's my body and my choice."
Pros of diabetes self-education
Living well with diabetes means spending time managing blood sugars, eating well, exercising consistently, and taking medications. It also means being informed. According to Garlinghouse, the benefits of self-education are that "it empowers people with diabetes to know they can collect information and better understand and manage their disease/diabetes to improve their health." She says she has learned far more from educating herself on diabetes topics (nutrition, exercise, stress-relief, etc.) than she has at a medical professional's office. "A doctor or nurse or other professional cannot possibly tell you what you need to know to manage diabetes (a BIG, confusing, ever-changing disease) in a fifteen minute appointment." Riffe agrees and says, "Unfortunately, often insurance dictates how much time (if any) can be reimbursed for spending time with an educator. Office visits with physicians can be limiting as well, making it difficult to provide detailed information about nutrition, effects of exercise, in depth understanding of how medications are working."
Benefits of self-education also include addressing specific issues or challenges. "For instance, someone with LADA may be able to find extremely helpful guidance online that his or her own provider may not be able to give since this type of diabetes is not well known or understood by many in the medical establishment," says Spritzler. A woman over fifty may have questions about diabetes and menopause, while a younger male may be concerned about the risks of diabetes and driving.
The more we know, the better we can take care of ourselves, and ask informed questions of our providers. "I especially like to work with clients who have done their own research," Riffe says. "They seem to have a better understanding of basic concepts, and ask some of the most intuitive questions. I like to think of self education as their pre-work to my meeting with them, which is more individualized."
The risks of diabetes self-education
The biggest risk of seeking information online is the question of accuracy. "Credentials are not needed and website content is not scrutinized, so someone could potentially make a change to their regimen based on information gleaned online that in the worst case could prove fatal," says Spritzler. "Also, even reputable website owners do not have the benefit of knowing each the complex history of each PWD who frequents his/her site, whereas a person's PCP, endocrinologist, or CDE has their labs, history, and self-reported symptoms, all of which provide highly useful information in providing appropriate treatment for the individual."
Many websites like TuDiabetes have disclaimers stating the contents provided are for informational purposes only, and recommend seeking the advice of a medical professional with any questions or concerns. Other diabetes blogs have badges such as the "HONcode" which states: "To cope with the unprecedented volume of healthcare information available on the Net, the HONcode of conduct offers a multi-stakeholder consensus on standards to protect citizens from misleading health information."
Finding a balance with self-education
It's important to strike a balance between self-education and the professional management of diabetes. "The degree to which one can manage his or her own care depends on the ability to critically evaluate and understand information found online," says Spritzler. "Those who find it hard to separate valid from inaccurate information would do best to rely more heavily on a good diabetologist/endocrinologist/CDE, while others may be able to do the bulk of education and management on their own with occasional guidance from health professionals."
Riffe believes that self-education should support the trained professionals, but not replace them. "The balance between self-education and incorporating a trained healthcare professional is pivotal for success. The benefits of self-education are significant, but should not be the only method."
Interview with Franziska Spritzler, RD, CDE
Interview with Devon Inglee
Interview with Lyndsay Riff, Medtronic CDE
Interview with Rachael Garlinghouse