I was diagnosed with Type 1 diabetes on a cold Saturday morning in college — particularly unfortunate timing because it meant that there were no diabetes educators on duty in the student health center where I was staying. In fact, none of the nurses seemed to know much about diabetes at all — my first dinner with diabetes came with a huge plate of rice. It wasn’t until Monday that I actually got to speak to someone about what diabetes was and how it was going to affect my life.
If only Riva Greenberg had published her new book, 50 Diabetes Myths That Can Ruin Your Life, and the 50 Diabetes Truths That Can Save It, in 2001 rather than 2009 — it would have been a huge comfort to be able to read, in clear, straightforward and reassuring language, the truth about what diabetes is and what power I have to control it.
Written with both Type 1 and Type 2 patients in mind, the myths Greenberg explores range from “People with diabetes can’t eat sugar” to “It’s not safe for people with diabetes to exercise or play sports” to “Most people who have diabetes eventually lose their feet.” (I would have liked to have cleared that one up early on, especially when a helpful nurse invited me to meet a diabetic patient of hers — we could bond! We both had diabetes! — and he showed up in a wheelchair.) It would have been great to know, during those first terrifying days, that women with diabetes can indeed get pregnant, and that there is no longer just one specific “diabetic diet” that everyone must follow. Greenberg is excellent at explaining both why it’s important to pay attention to and actively manage your diabetes, and why, if you do so, diabetes will not ruin your life.
Today I’m well educated about my diabetes and take a very active role in managing my care — and, after nearly nine years of living with this disease, I’m at a point where I was aware of the truth behind many of the myths that Greenberg describes. That’s not to say that I knew everything in the book — I was very interested, for example, to learn the official word on whether it’s okay to reuse your needles — but I don’t think I’m its target audience.
Rather, I think that the people who will find it most useful are those who were recently diagnosed with Type 1 or Type 2 and are struggling to understand what it means to have diabetes, people with “pre-diabetes” who don’t understand the importance of taking pro-active steps to prevent and control the disease, and anyone with diabetes who’s so scared by the idea of having the disease that they try their best to ignore it.
By tackling some of the myths that non-diabetic people have about diabetes (“Eating sweets causes diabetes,” “insulin shots are very painful,” “healthful foods won’t raise my blood sugar”), Greenberg’s book is also a great resource to educate well-meaning family and friends — the next time someone criticizes you for eating a cookie, consider sharing this book with them as a gift.
Greenberg, who’s also the author of The ABCs of Loving Yourself With Diabetes, speaks from personal authority: she’s had Type 1 diabetes for nearly 40 years and is committed to helping people with diabetes create their best lives — as she puts it, “not despite having diabetes but because of it.” “I view living with diabetes as a stimulus to create greater health and a more joyful life,” she writes. “Many people with diabetes begin to eat better, get regular exercise, appreciate what they do have and create a life that has meaning and purpose.” Inspired by her positive attitude, I recently sent Greenberg a few questions about her new book and about her attitude toward living with DM.
What inspired you to write this book?
I was sitting in a ‘Coping with Diabetes’ workshop led by psychologist/certified diabetes educator Bill Polonsky, and he asked everyone, “How many of you think diabetes is the leading cause of blindness, amputation, heart attack and kidney disease?” Everyone raised their hand – including me. Then he said, “You’re wrong. Poorly controlled diabetes is the cause of these things.” In that moment three things happened: I felt relief flood my body — I’d worried about these things all my life. Second, I knew I could impact my health and so I began to take better care of it. And third, I realized the limitation and harm of believing myths and the power of knowing the truth.
You’ve had Type 1 diabetes for nearly 40 years — and are very well educated about the disease. Did you learn anything that surprised you when you researched the book? If so, what?
Actually what surprised me most was how many myths there are around diabetes and how pervasive they are. Also, how little education patients truly get both about diabetes and how to manage it. Among the many myths that were busted for me: “If anything were really wrong with my foot it would hurt” and “Teens take better care of themselves when they realize the importance of doing so.” I also learned a lot of great tips like the magical “Plate Method” for creating easy, healthy meals, how much financial aid there is out there for medicine and supplies and got a lot of wise advice from my consulting diabetes specialists.
Your book speaks to the fact that, despite the flood of media coverage about our epidemic of (Type 2) diabetes, there are still many myths and misunderstandings about both Type 1 and Type 2. If you had to convey just three facts to the American people about what diabetes is and what it means to live with it, what would they be?
- Diabetes is not about avoiding sugar, it’s an every day balancing act between what you eat, your activity and your medication, and that requires frequent blood testing and constant decision-making.
- For most people type 2 diabetes is preventable if you eat healthily, stay active and keep your weight in control. If you have a strong genetic marker in your family for Type 2 diabetes, get a fasting blood glucose test at least every other year. If your doctor says you’re borderline, change your ways now and you may never get diabetes.
- Like any chronic condition, diabetes requires emotional resilience. People may be embarrassed to take a shot, feel guilt or shame that they caused their disease or anger or frustration that they can’t always control it. Encouragement and support go a long way in helping people manage diabetes well and we should be getting this from our health care providers as well as our family members.
On a similar note, what policy changes do you think would be most effective to stop the spread of diabetes — both Type 1 and Type 2 — and to help people already living with it?
We have to make the “healthy choice” the “easy choice.” For instance, in Finland they have a very high incidence of diabetes and so they laid down numerous bike lanes in the city. In Singapore I visited a hospital where they encourage you to use the stairs. We have to make our systems ones that support health. Our entire food system has to change. We have to stop paying farmers to grow a surplus of corn that then needlessly ends up in our food as high fructose corn syrup, a cheap sweetener, that messes with our metabolism. We’d have to make healthy foods equal in price to junk and fast food. Restaurants now typically serve portions double the size of what we should eat, so people are eating twice what they should and emulate this at home. In Europe a slice of cake is a third the size it is here. As for people already living with diabetes we have to find an economical way to make sure everyone has access to medicine and supplies, from insulin to meters and test strips.
So often, diabetes is a cause of depression and frustration — and yet you write that you believe that having diabetes has actually helped you live a more joyful life. Can you elaborate?
People who’ve suffered a major illness often take stock of their lives and realize what’s truly important in life. We see the fragility of life and find more pleasure in simple things. We have more appreciation for our friends and family, the simple things that give us joy. When I asked a group of 27 women to tell me one positive thing diabetes had given them, all but two had an answer. For some it was humility, or a greater sense of worthiness helping family members with diabetes. For some it was more compassion for others with conditions worse than diabetes. Others thanked their diabetes for motivating them to lose weight or become more fit. For me, I’ve maintained a 30 pound weight loss for over 25 years, I walk like a demon and have a great sense of strength and pride in living pretty well with diabetes. It’s also given me this work and allowed me to educate and inspire others. That’s deeply rewarding.
What are some of your coping techniques when, despite your overall positive attitude, diabetes gets you down?
Tears are good – let it out and then it passes. So is talking to someone close to share the fear or worry, whether it’s my husband or a friend who has diabetes. Then I go back to my normal routine. And realizing life isn’t forever, so let’s get on with it.
What advice or words of wisdom do you have for someone who has just been diagnosed (or for the parents of a child who has just been diagnosed)?
Learn, learn, learn. The more you know, the more in control you’ll be and the better you’ll do. Whether you’re the patient or the caregiver, learn everything you can. Go to a health fair and see what’s out there and talk to people. Also, find others with diabetes and share, whether it’s at a local support group or on the internet. It seems incredible to me I never knew anyone with diabetes until eight years ago when I started doing this work. Being able to share our experiences, information and feelings is priceless.
Lastly, what do you hope people will take away from reading your book? And whose decision was it to put ice cream cones on the cover? (I occasionally eat ice cream myself, but I still thought that was pretty funny — especially the one with what appears to be caramel!)
I know that reading the book people will have all the latest information they need to know about managing diabetes– they’ll have wisdom and recommendations from diabetes experts across the whole spectrum of diabetes care, and they’ll read about fellow patients’ “lessons learned.” I hope they’ll feel inspired and ready to take on whatever is still a challenge and do a little better. Also, the book isn’t written like a dry, medical book. It’s conversational, engaging and there’s a lot of my story in it which makes it as though they’re coming along on my journey to a much better place. As for ice cream cones, actually it was my brilliant editor’s idea and I couldn’t be more pleased. I didn’t want the typical healthy apple or meter displaying the perfect blood sugar number on the cover. So, instead, right on the cover we debunk a major myth about diabetes – yes you can eat sweets and enjoy them, even with a little caramel!
“50 Diabetes Myths That Can Ruin Your Life” is available wherever books are sold. Riva is also the author of “The ABCs of Loving Yourself with Diabetes.” Available in English and Spanish, “The ABCs” coaches readers to better manage diabetes through positive emotions. To learn more about Riva’s work and read her blog, visit her web site diabetesstories.com.