Dialoging about Diabetes: PWDs Offer Ways to Improve Communication and Care #10 Catherine Price
As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of the Diabetes Online Community, the DOC for short (link to handout), is helping people with diabetes (PWD) and their loved ones find support and feel supported. People and their caregivers are connecting, building relationships and feeling more positive about the challenges of managing their diabetes. I’m delighted to see this trend!
As a DHCP I’ve long realized that I can’t walk a mile, or even a few feet, in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to change the dialog between providers and PWD to be more positive, more supportive.
Goal one with my Dialoging about Diabetes interviews is to help make living with diabetes…just a bit easier. Goal two is to enhance the two-way street – to help more PWD connect and encourage more DHCPs to open the doors of social networking to PWD.
Here’s my dialog with Catherine Price, who’s had type 1 diabetes (T1D) since 2001. Catherine engages with the DOC in several ways, writing and blogging for the diabetes site ASweetLife.org, organizing patient advocacy efforts and talking about the DOC at medical and pharma conferences. Beyond being a PWD and doing diabetes-focused consulting work, Catherine is a nationally known journalist. Her work has appeared in publications including The Best American Science Writing, The New York Times, and Slate Magazine. Inspired in part by T1D and her interest in writing about nutrition -- she’s written the new book, Vitamania: Our Obsessive Quest for Nutritional Perfection. But first, enjoy Catherine’s responses to my questions about life with diabetes, the DOC and insights from her new book.
HW Q: How has being involved with the DOC influenced your life with diabetes?
CP A: Living with type 1 diabetes (or, for that matter, any kind of diabetes) can be extremely isolating and emotionally challenging. I don’t have many “real life” diabetes friends, so it’s been really wonderful to become a part of a warm, welcoming community of other people who understand exactly what it’s like to constantly be thinking about your blood sugar. Being involved with the DOC has also inspired me to focus more of my own writing on diabetes. The first major piece I ever wrote about diabetes – and the piece I’m still most proud of – was an essay for The New York Times’ Well Blog called “Thinking About Diabetes With Every Bite.” The responses I got from readers and other PWD really inspired me. Ever since then, I’ve tried to use my writing to help give a voice to other PWD’s feelings, and to help other PWD feel less alone. These days I try to write about diabetes whenever I can – most often for ASweetLife.org, which is a wonderful site run by a husband and wife duo both who have diabetes (but were diagnosed after they met!). I love the site because of its amazing combination of excellent writing, scientific depth and emphasis on living healthily and happily with diabetes.
HW Q: I realize you’re a journalist by trade. How does having diabetes influence the topics you like to cover?
CP A: Diabetes has forced me to think about food all the time – I’m obsessed with the details of what I put into my mouth, and can’t look at anything edible without immediately guesstimating its carbohydrate content. I wish I didn’t have to spend so much time thinking about nutrition, but on the flip side, it’s definitely helped me focus my attention, writing-wise. I really enjoy learning about the interactions between our bodies and our food and communicating that information to the public.
HW Q: What led you to write Vitamania: Our Obsessive Quest for Nutritional Perfection? Was there any connection to you having diabetes?
CP A: The honest to goodness truth is that one day my husband turned to me and out of the blue asked, “What’s a vitamin?” When I realized that I didn’t have a good answer for him, he said, “You should write a book about that.” But I don’t think I would have embarked upon this project, or that he would have thought to ask me that question, if diabetes hadn’t already forced me to spend so much time thinking about nutrition. I also think that diabetes gave me a different perspective on this topic from most journalists.
HW Q: What are the main themes and conclusions in your book? How are these relevant to people with diabetes?
CP A: The main conclusion is we don’t know as much about human nutrition as we like to think we do, and that there’s no way to reverse engineer a perfect eating plan. Instead, it turns out that the eating plan that’s healthiest in terms of vitamins is the same one that’s healthy for PWD: limit refined and processed foods and eat foods that are rich in vitamins chances are they contain other good stuff, too.
HW: I agree with you taking a 'food first approach' in Vitamania. I do think many of the pieces of the nutrition and health puzzle are solved with more science to come over time, for sure. I've written two of my Washington Post Nutriiton Q&A columns on the topic of supplements. One in which I quoted you, on the need or not for fish oil supplements and another on the need to take multivitamins or not.
HW Q: Based on research for your book, are there any dietary supplements you think people with diabetes should consider taking?
CP A: I’m not a fan of taking dietary supplements of any kind without good reason. With that said, I have come across interesting research suggesting that people with both Type 1 and Type 2 diabetes break down and clear thiamin (B1) from their bodies more quickly than people without diabetes, that thiamin deficiency is underdiagnosed in PWD (because of issues with methods used to test for it) and that there might be some potential connection between the risk for certain complications and thiamin levels. Since thiamin is one of the safest vitamins, in part because it’s a water-soluble vitamin – there’s not even a Tolerable Upper Intake Level established for it.
I also learned that some common medications used in diabetes management can interfere with absorption of certain vitamins. Metformin, for example, can lower levels of vitamin B12 minimally in some people over time, so it’s worth getting your B12 levels checked if you’ve been on Metformin for more than a year or two. And large doses of niacin, which some people take for managing blood lipids, can raise blood sugar levels (reference: http://umm.edu/health/medical/altmed/supplement-interaction/possible-interactions-with-vitamin-b3-niacin.)
HW Q: From living with diabetes for 14 years, what are your learnings and messages to us diabetes healthcare providers (DHCPs) about helping PWD and their caregivers with the ins and outs, ups and downs of life?
CP A: Most importantly, acknowledge our accomplishments! Managing diabetes is emotionally draining and extremely hard work. Too often DHCPs immediately begin to try to solve problems without first acknowledging what we’re doing well and what’s going well. Even saying something like, “I can see you’re working really hard,” can mean a lot. Also, starting the visit with open-ended questions, like “What would you like to talk about or work on today?” can go a long way toward making the PWD feel heard.
HW Q: How would you like to see the DOC evolve over the next five, ten years?
CP A: I hope that we can continue to join together on advocacy efforts – we had great success last year using Twitter to convince Arizona’s legislature to reinstate coverage for insulin pumps for adults on Medicaid. One of my current top personal goals is to convince CMS (the government agency that makes decisions about Medicare) that it should cover continuous glucose monitoring systems (CGM) for Medicare beneficiaries with type 1 diabetes.
HW Q: How can people connect with and follow you online?
CP A: Feel free to reach out via Twitter (@catherine_price), my Facebook author page, or the Contact form on my website (http://www.catherine-price.com)
HW: Thanks for taking time on this interview. Thanks also for your work in the diabetes community and beyond to offer science-based accurate reads and also for your advocacy efforts on behalf of PWD.