One of the most exciting new features we added this past year was the various interviews we did with people from all walks of life working hard to make the lives of type 1 diabetics better every day. One of the most inspirational people we were honored to interview was Riva Greenberg, a diabetes advocate and author who has almost 40 years of experience living with type 1, has traveled across the country talking with and inspiring diabetes patients, and has written books such as 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It and The ABCs Of Loving Yourself With Diabetes.
She presents a very unique and refreshing view of living life with diabetes, and reminds us all why we need to continue being strong and positive advocates.
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Based on your experience traveling the country and helping educate and inspire fellow diabetics, you must have gotten to hear many personal stories about living with type 1. What would you say are the unified messages or themes you get from these accounts? What are people most scared about, and what do they find hope or encouragement in?
As it turns out I just flew home from Portland, Oregon where I delivered a peer-mentor educational program I give to help patients learn more about managing their diabetes. While these audiences are largely type 2s like the general population, I had a good number of people with type 1 in the group.
In general what I hear from people with type 1 diabetes is the never ending-ness of it. Being on patrol 24/7; that there are no vacations from type 1 diabetes management. Also, the fact that you can do the same thing one day to the next and get different blood sugar numbers. I think the outside world thinks the worst thing about having type 1 diabetes is taking injections, but people with type 1 will never say that, they say the worst thing is the constant balancing act between insulin, food and activity and that you’re always thinking about it and how to maintain the balance.
I think most people with type 1 are scared about complications and/or having a serious low especially at night while they’re sleeping. All the more reason for the intensity of type 1 management. Those who do well have typically found a way to see something positive in their diabetes. Many have used it to get fitter, eat healthier, appreciate what they have in life and commit to something that gives their life meaning.
When I’m invited to speak I often talk to patients about “flourishing” with diabetes rather than “coping.” It’s a different mindset. When people are living from a coping mindset they tend to see themselves as a victim and get caught up in the struggles of diabetes. When people are living more from a flourishing mindset, they’re looking instead at what’s working in their lives and moving toward the full and rewarding life one can have with diabetes.
Your first diabetes book, The ABCs Of Loving Yourself With Diabetes, focuses on the importance of positive thinking and healthy energy as a way of coping and living a productive life with diabetes. Do you believe that a community that has a much happier outlook on life would be content with only managing diabetes and not worrying so much about a cure, or would you say such positive energy can be used to motivate us even further in this pursuit?
See, isn’t it interesting, you used the word “coping” in your question and I’d change the word to “flourishing.” I’d also say your two choices about whether one would be content with only managing diabetes and not be concerned about a cure or using their positive energy to find a cure are not mutually exclusive. I certainly hope a cure will come in my lifetime, and if I were a medical researcher looking for a cure I’d be looking with all my energy, but I’d also appreciate that until there was a cure, that my day to day life would be more satisfying and my diabetes management would be as painless and easy as possible.
Is it difficult sometimes to keep hoping and staying positive when faced with big-scale problems, such as the issues in the UN Summit on non-communicable diseases? When the top institutions and people in charge are failing to put money towards providing better care for people, how do you fight the feeling of helplessness?
I don’t think most people are focused in their daily lives on the big scale issues, but focused on getting through the day. Of course, those of us who work in diabetes are disappointed how slowly society is addressing our needs. The fact that the world still is not taking the costs of diabetes in compromised health, job productivity and our global financial prosperity seriously, as demonstrated by the fact that the US, Europe and Canada are dragging their feet committing to outcomes for the UN Summit on non-communicable diseases (http://www.huffingtonpost.com/riva-greenberg/un-summit-non-communicable-diseases_b_933586.html) is disappointing. I’d be shocked but I’m too much a realist to be shocked.
Why is it you can buy a burger for only $.99 yet one piece of fruit can cost you as much or more? Why are there so few places at an airport where you can even find something healthy to eat? Why do big companies work almost exclusively to profit shareholders and meanwhile customers can’t afford test strips? As for fighting the feeling of helplessness, I’d first reframe that to say how do you empower yourself in the face of these challenges? You do it in the same way you empower yourself in any situation: You see what you can do in your little corner and do it. You make more meals at home rather than eat out, bring your own food to the airport, get involved in your local diabetes chapter to help others or lobby your local leaders. Action is always an antidote to helplessness.
What is the one piece of encouragement you would give to a newly diagnosed person with diabetes?
The one piece of advice I’d give is learn, learn, learn, never stop learning. The one piece of encouragement I’d give is that you can live a great life, not despite diabetes, but because of it when you use it as a catalyst to get healthier, appreciate what you have in your life and find a purpose that benefits you and others.
The JDCA aims to be an independent analyst of the type I diabetes philanthropic landscape. We are seeking to form a paradigm-shifting coalition of donors who will work together to facilitate a cure for type 1 diabetes by 2025. Two of our major tenets are the importance of defining a cure and establishing a cure-by date.
What is your definition of a cure? What restrictions would need to be lifted off a person’s lifestyle for you to consider something to be a “cure”?
Wow, that’s quite a question! What I’d consider a cure is I can live like someone who doesn’t have diabetes. I don’t consider the artificial pancreas a cure. There’d be no technology on me, although I could imagine something implanted in me that operates automatically and doesn’t require anything of me. Or a cure might come from an infusion of islet cells one time, and I’m up and running for the rest of my life as if I didn’t have diabetes.
As for what restrictions would need to be lifted off one’s lifestyle, that’s a hard question for me to answer because I don’t see any restrictions on my lifestyle. My only restriction probably is that I need to carry a meter and glucose tablets. I eat what I want when I want, and I follow a very healthy diet because I want to be healthy. I exercise usually an hour a day and I do so to maintain being fit and trim. I don’t regard my diet or exercise as restrictions.
Based on your interactions with the diabetes community, when do you think this will be achieved?
To be honest, I haven’t a clue and I prefer not to guess. When I was diagnosed almost 40 years ago I was told we’d have a cure in five or ten years. Every decade I heard that. Knowing how slowly things go, how long approvals take from the FDA, how many stages there are to drug trials, I wouldn’t venture a guess. While a cure would be amazing, I’m happy to focus on ways to make daily management easier and every day fulfilling.
Riva Greenberg
