My diabetes diagnosis feels like a flashbulb memory, a shocking moment I can remember with perfect clarity. I can recall everything that was in the doctor’s office – what he was wearing, the expression on his face, the way he shrugged in a sort of apologetic way – as if it were yesterday. I don’t think I’m alone in my sharp diagnosis memories. Hearing that you or a loved one has a chronic and incurable illness is a life-defining moment. When you leave the doctor’s office, you may not feel you’re the same person who went in.
Coming to terms with a diabetes diagnosis may feel overwhelming. You not only have to learn how to test your blood sugar and quite possibly take medication; you may also need to modify certain aspects of your lifestyle, including the way you eat and exercise. If you are a caregiver, you may need to learn how to help and support someone with the diagnosis. Your healthcare provider will explain your treatment plan to you, a nutritionist can help you with your diet, but you may also benefit from the many resources that exist to help you navigate through your early days with diabetes. Here is a list of some that I’ve found helpful – ranging from major diabetes institutions to online community support to books and magazines. This list is far from complete, but I’ve personally found each resource useful in its own way. If you’ve found another helpful resource, consider registering on The DX and commenting to share it.
Diabetes Resources: Organizations
The American Diabetes Association (“the Association”). The Association is America’s leading nonprofit diabetes organization and funds research, provides information, offers support, and advocates for people with diabetes.
Within the Association, there are community programs aimed at increasing awareness, preventing diabetes among at-risk populations, and ensuring all people with diabetes get the best care, treatment, and information about how to manage their condition. Click here to learn more about community programs in your area.
For those diagnosed with or caretaking for someone with type 2 diabetes, the Association also offers a free program in English and in Spanish called “Living with Type 2 Diabetes Program.” By registering for the program, you can receive ongoing support and healthy living information.
JDRF (originally known as the Juvenile Diabetes Research Foundation) is the leading global organization focused on type 1 diabetes (T1) research. The goal of JDRF is to improve the lives of all people affected by T1 through accelerating progress on the most promising opportunities for curing, better treating, and preventing it. JDRF has chapters across the US through which you can become involved in fundraising activities, volunteer, and meet others with diabetes. Find a chapter near you.
JDRF also has several resources specifically aimed at those newly diagnosed with T1. For adults, JDRF offers The Adult Type 1 Toolkit, available free for download. With their parents’ permission, newly diagnosed children can visit JDRF Kids Online for support and resources. And for newly diagnosed children and their parents, JDRF provides a Bag of Hope, a backpack filled with information and tools, including Rufus, the stuffed Bear with Diabetes.
Diabetes Resources: The Diabetes Online Community (“DOC”)
There is a large online community of people with diabetes known as the DOC, which is one of my personal favorite resources. It may feel as though a diabetes diagnosis comes with an overwhelming amount of do’s and don’ts and instructions, and this can feel isolating, as well as confusing. The DOC helped me find others who have been in a similar situation and were able to empathize with my mix of emotions. I’ve listed a few of the popular blogs in the DOC below and categorized them by type of diabetes, but be sure to also check out the blogrolls on all of these sites for even more blogs you may be interested in:
● The Girl’s Guide to Diabetes
● Scott’s Diabetes
● Cranky Pancreas
● Tales of Rachel
Blogs by Parents of Children with Diabetes
● D-Mom Blog (features a section devoted to newly diagnosed children)
● Houston We Have a Problem
● Arden’s Day
In my opinion, another important stop after a diabetes diagnosis is Diabetes Social Media Advocacy (DSMA), which was founded by Cherise Shockley. DSMA is part of the DOC, and promotes social media in all its forms to help empower people affected by diabetes, enables them to connect with each other, and fosters peer-to-peer support and education. DSMA holds a TweetChat every Wednesday which can be found by searching #DSMA on Twitter; you can comment on specific questions or just follow the conversation.
Diabetes Resources: Books
This book may be especially helpful to those just diagnosed: it offers a specific plan for the first 30 days, then month-by-month suggestions for what may come next. It touches on everything from a basic explanation of diabetes and what’s considered acceptable to eat right away to instructions on how to check glucose to more extensive information about diabetes nutrition and better blood sugar management when you’re ready to go deeper in your understanding.
The Joslin Guide to Diabetes
From Joslin Diabetes Center, Harvard University’s noted diabetes research and clinical care organization, this book covers how to develop a workable meal plan, how and when to monitor and treat blood glucose levels, how to administer insulin, the wide range of available medications, the importance of physical activity, and other vital information. It’s a great reference piece to have on your bookshelf when questions arise.
This extremely useful book is by Gretchen Becker, a particularly well-informed writer on the topic. Becker not only completed four years of graduate school in the biology department at Harvard, but she is also a person living with T2 who writes especially for other people living with T2.
Diabetes Resources: Magazines
Diabetes Health is a print and online resource for people living with diabetes—both newly diagnosed and experienced veterans—as well as the health professionals who care for them. It provides balanced expert news and information on living with diabetes.
Diabetes Forecast is the Association’s lifestyle magazine, available in print and online. It covers more than just research updates and news. It expands its focus to include many aspects of living with diabetes, including recipes, expert advice, and profiles of celebrities and advocates with diabetes.
ASweetLife is an online diabetes magazine which I co-founded with my husband, who also has diabetes. ASweetLife promotes healthy living with diabetes. It covers news, diabetes research, personal stories, and food. The site hosts many bloggers, and often offers a fair share of humor and sarcasm.
Whichever methods you choose to learn more about diabetes, you should remember that you are not alone, and that there is so much available to help you, whether you want a specific question answered, a broader understanding of diabetes, or the support and camaraderie of caring people who are experiencing something similar. The DX may help too, with both original content (don’t forget to search the archives!) and stories curated from around the Web, all focused on life and life with diabetes. Any or all of the above resources may be able to help you cope and learn more, from your diagnosis and onward.
Jessica Apple is the co-founder and editor-in-chief of the online diabetes lifestyle magazine ASweetLife. Her writing has appeared in many publications, including The New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, and Tablet Magazine. Apple is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor, and not of Sanofi US, its employees, agencies, or affiliates.
© 2012 The DX: The Diabetes Experience