Rather than accepting this state of affairs, Amy Tenderich, journalist and author of the popular blog DiabetesMine, decided to take action. She teamed up with Dr. Richard Jackson, director of outreach at the Joslin Diabetes Center, to develop Know Your Numbers, Outlive Your Diabetes, a practical guide for people with diabetes and those who care for them.
In the following interview, Tenderich talks about why she wrote the book, how she designed it to be appealing to a diverse audience, health literacy, and why she hates the word “noncompliant.” She also offers some tips to health communicators looking to work with bloggers and patients to spread the word about diabetes-related products, services and issues.
Why You Wrote The Book/About The Book
Q: There are a lot of books, Websites, brochures, magazines and other diabetes resources currently available to consumers. What do you think Know Your Numbers, Outlive Your Diabetes provides that other publications do not?
A: Ironically, the "therapeutic goals" for diabetes patients are well-publicized, but nobody gives most patients much idea how to achieve them. Until now, no useful, practical guide existed to help people with diabetes get a handle on their own health. Know Your Numbers, Outlive Your Diabetes is designed to be THE essential action-oriented handbook and diabetes reference guide.
Q: Health literacy is notoriously low in this country. What steps did you take to ensure the book is clear and accessible?
A: Dr. Jackson is a highly experienced clinician, and I am the down-to-Earth "voice of the patient" reporter – so we believed we might just be the perfect pair to create the ultimate hands-on guide, teaching people the medical basics in very clear laymen’s terms.
I’m known on my blog, www.diabetesmine.com, for a straight-up, no-BS informative style that’s also fun to read. We wanted the book to read like that – like a conversation with a friend.
Q: Some minority groups, including African Americans, have very high diabetes rates. Do you feel the book is useful for diabetics and caregivers in these patient populations?
A: Absolutely! In fact, we had these people in mind while conceptualizing the book.
Consider the case of Florene Linnen, whose black community in Georgetown County, South Carolina, is literally being wiped out by diabetes. Amputations, blindness, and death are rampant. Yet no medical professional had ever explained the seriousness of the disease to them. When she first attended a diabetes workshop in 1997 – after having diabetes for over a decade – a speaker asked, "What were your numbers the last time you saw your doctor?" Linnen had no idea what he was even talking about.
Later, when Linnen's own mother was diagnosed, the nurse simply said that her blood sugar was "just a little high." "How high?" Linnen asked. Turns out she was at 382! Allowed to go on like this, Linnen's mother would have been next in line for amputations, blindness, and death.
Our aim is to help people like Linnen and her community by arming them early on with the information they need to avoid the damage that diabetes can do.
How The Book Helps People Prevent Diabetes-related Complications & Burnout
Q: What are the five tests every diabetic should get? Why do so many adults with diabetes skip them or have little understanding of what the results mean?
A: The 5 most important health values you need with diabetes are:
- Hemoglobin A1c—a measure of the average amount of glucose in your blood over the last several months
- Blood Pressure—a quick, painless armband test to determine the force of blood flow through your body
- Lipid Profile—a group of blood tests measuring your cholesterol and triglycerides (another type of fat), which is used to determine your risk of heart attack or stroke
- Microalbumin—a urine test that is an early indicator of kidney damage
- Eye Exam—a yearly exam that consists of dilating your pupil, allowing the doctor to see the back of your eye
Despite being widely accessible and easy to administer, fewer than 42% of adults with diabetes have either had these tests, or understand what the results mean, according to an April 2006 report by USA Today. Moreover, medical experts estimate that less than 20% of diabetes patients have ever had all five of these factors measured.
Why aren’t more people with diabetes tuned in to these critical tests? Lots of reasons. Doctors may be pressed for time or resources, while patients may be uninsured or uninformed or overwhelmed and under-motivated.
Very often people with diabetes focus on the stuff they feel guilty about (usually weight or food), when that may not even be their most critical health issue… What they don’t usually do is get the hard facts on where they stand in terms of their own diabetes health risks. But this is what’s really going to improve the quality and length of their life. We’re hoping that our new handbook – focusing on these 5 critical test – will point people in the right direction.
Q: People are notoriously noncompliant with their medications. What tips do you offer to help diabetics remain compliant over a lifetime?
A: Please, please, never use the term “noncompliant”! This negative term blames the patient for willfully choosing to ignore doctor’s orders, implying that we don’t care about our own health. In reality, most every human being IS MOTIVATED to live well and long. It’s just that managing your diabetes day-in and day-out is a lot of hard work, and an incredibly thankless job in the short-term. It’s not like we get points for all the foods we didn’t eat this week, for example.
Imagine that YOU were told you can never enjoy sweets, always have to count every gram of carbohydrate on your plate, exercise a minimum of 4 hours per week, and meticulously take oral or possibly injectable medications multiple times a day. Would you always follow these instructions perfectly? Um, no, I thought so . . .
Getting control of your health with diabetes really is a mental game every single day. See my newest dLife column on this topic here.
Our book is designed to offer a message of empowerment and to help people develop a framework for a lifetime of proactively managing their own health. But we’re not pretending it’s always easy.
Q: How does your book help people stay upbeat and confident while living with diabetes?
A: Again, diabetes is a mental game. It can be very depressing, especially if you have other pressures in your life that make it hard to focus on your diabetes management.
One of the big messages of our book is efficacy, as in believing that YOUR ACTIONS MATTER, NOT JUST YOUR DOCTOR'S. We provide many tips for everyday motivation. For example, thinking about “checking” your blood glucose rather than “testing” it; daily BG values should provide good information about next steps to take, rather than causing stress over a “failed test.”
Even though feeling overwhelmed and negative is incredibly common among people with diabetes, traditionally there was no easy way to measure whether you were just experiencing the everyday frustrations, or whether you were genuinely distressed—and possibly in need of help. We actually provide an extensive chapter called “Diabetes and Your State of Mind,” which includes two survey tools (from the Behavioral Diabetes Institute and the Center for Epidemiologic Studies) to evaluate your level of distress. The good news is, there are more classes, programs, and counseling options available to distressed patients now than ever before.
Effectively Communicating About Diabetes
Q: Clearly, people with diabetes are not receiving (or comprehending) the information they need. What does it take to effectively communicate about this condition to a diverse and far-flung audience?
A: Good question. Research shows that with today's advanced treatments, complications to the eyes, heart, nerves, and kidneys can be greatly minimized, if not avoided altogether. Yet data shows that their incidence is actually growing. How can this be?
A combination of flaws in the healthcare system and misinformation/lack of education is definitely at work. Many, many patients do seem to "fall off the map" by not coming in to see their doctor or diabetes educator for months or even years at a time. Most of these are Type 2 patients, out in areas of the country where a doctor's office is much more than just a 15-minute jaunt to the nearest office park. (See also my post on “What Gets in the Way.”) It is a national challenge to reach these people with the essential health information they need. We can only hope that a book like ours helps chip away at this nationwide epidemic.
Q: How are blogs and other forms of “social media” helping people with diabetes learn about and cope with the condition?
A: My take is that blogs are TAILOR MADE for the diabetes community. Why? Because diabetes is such a unique disease: chronic, yet largely controllable by the patient (with a lot of work and perseverance). The biggest issue most of us face with the challenge of our 24/7 self-care is ISOLATION. Blogs and other social media help people reach out and build a community, significantly offsetting this sense of isolation.
Blogs also allow people to report from the heart on what it's really like to live with this volatile disease. We can learn from each other’s experiences rather than being limited to knowing only what our doctors tells us.
There is a huge proliferation of blogs at the moment (more than 100 million as of October 2005, according to the The Blog Herald), but “the ones that count are very few in number and they have become regular meeting places for discussions.”
Q: What are the best ways health communicators can help patients, caregivers and other “citizen medical experts” producing social media learn about the evolving diabetes landscape?
A: Keep it real. We all recognize how profitable the diabetes market is, and we’re wary of being peddled to. We want to be informed about new treatments and offerings, but we need to believe that the source really cares about the people with this disease.
If you have something to pitch, try sending a personal note, rather than a "form pitch." And make sure your message is clear about how this new development truly improves patients' lives.
Remember, this is the Era of Transparency, in which raw honesty is the only way to go. So treat us with respect, and we will respond in kind.
Q: Please provide some final words of wisdom for those communicating with diabetics, their loved ones and caregivers.
A: If you really want to gain an understanding of what diabetes means to the people who live with it, spend some time with the Diabetes Community.
I personally can hardly imagine how I'd feel about this disease if I didn't have the blog as an outlet and a hub for connecting with others. The major advantages to blogging with diabetes, in my mind, are that I can:
- Meet people and build community
- Learn about new research/treatments and gain confidence
- Keep up my motivation even when I hit rough spots with my glucose control
- Help and mentor others with diabetes
- Laugh a little about this aggravating disease, and have some fun