Where Support and Education Intersect
Blog. It sounds like something you would say when you are feeling under the weather (“I’m feeling so blog today…”), but it is actually short for Web log, a regularly updated online journal. Blogs were originally used by people who wanted to keep in touch with friends and family, but their functions have expanded since then. Many blogs are now devoted to current events, popular culture, and special interests of all kinds, including diabetes.
A blog allows a person to share his thoughts with anyone on the Internet who cares to read them. Readers have the option of responding to the author, or blogger, via comments, which the blogger may or may not choose to post online. Readers can also respond to the comments of other readers with their own comments.
A blog can also feature the writing of multiple contributors. The Diabetes Self-Management Blog (www.diabetesselfmanagement.com/blog), for instance, has weekly entries by five different bloggers, each of whom offers different information and a different perspective on living with diabetes.
Most blogs are created using a blog hosting service, such as
Blogger.com, Livejournal.com, or WordPress.com. Ready-made templates allow people with no Web site experience to begin posting their thoughts immediately. (To learn more about starting your own blog, check out “Getting Started With Blogs.”)
When delving into the world of blogs, it can seem overwhelming at first. More than 200 million blogs exist, with blog search engine Technorati (www.technorati.com) tracking more than 130 million. But in the world of blogs, there is a small neighborhood of bloggers known as the Diabetes Online Community, or the Diabetes O.C. This group of individuals has formed its own online support group and education forum, where bloggers share their personal experiences, frustrations, and questions about diabetes, along with other facets of their lives.
Diabetes support groups are not new, and their value has long been recognized.
“It is my contention that good support is the most important influence on the individual’s ability to manage diabetes successfully over the years,” says William Polonsky, PhD, founder and director of the Behavioral Diabetes Institute and author of the book Diabetes Burnout: What To Do When You Just Can’t Take It Anymore, published by the American Diabetes Association. “When you have someone rooting for you, it can make all the difference in the world.”
Blogging is a relatively new format for diabetes support, where people read and submit comments to blogs from a computer instead of talking in person. This type of online communication allows readers to tap into the experiences of others from all walks of life.
Blogs have also opened the door to more patient-driven education. Instead of relying solely on medical professionals for information, people now use blogs to share experiences and advice about what has and hasn’t worked for them.
According to Dr. William Quick, an endocrinologist with Type 2 diabetes and blogger at HealthCentral.com, “Diabetes demands a different model of care: patient participation and empowerment.”
Amy Tenderich, a journalist with Type 1 diabetes and author of the award-winning blog Diabetes Mine (www.diabetesmine.com), concurs. “My take is that blogs are tailor-made for the diabetes community. Why? Because diabetes is a unique disease: chronic, yet largely controllable by the patient, with a lot of work and perseverance.”
Diagnosed shortly after the birth of her third child at age 37, Amy scoured the Internet for information and came up short in patient perspectives. “There didn’t seem to be any ‘real voice of the patient’ out there,” she says. “A noncommercial site that would be consistently informative but also a offer a community where we could vent, share, and laugh a little. Blogs allow people to report from the heart on what it’s really like to live with this volatile disease.”
The following three blogs display that commitment to creating an environment where honest discussion of life with diabetes can flourish.
George, 34, is a self-proclaimed “born-again diabetic.” Diagnosed at 17, George rarely thought about his diabetes. He checked his blood glucose level only every few weeks. And while he injected the amount of insulin his doctor prescribed, he never paid attention to what he was eating, and he smoked a pack of cigarettes a day. His visits to the doctor were few and far between.
“There was absolutely no management at all,” said George. “I did not want to care. I wanted to be ‘normal.’”
In January 2006, George found a podcast (a digital audio file that can be played on a computer) called diabeticfeed (diabeticfeed.blogspot.com) that was hosted by Christel Marchand and produced by John Aprigliano and that covered news, research, and personal perspectives about diabetes. One show featured Kerri Morrone, a 27-year-old with Type 1 diabetes and author of the blog Six Until Me (www.sixuntilme.com). George visited her blog and saw links to other blogs by people with diabetes. He began visiting each on a regular basis.
“The first few blogs I read I thought to myself, ‘These people are hard-core. I don’t think I could be on top of this the way they are.’ But then I would see people stumbling.”
The support group atmosphere helped him emotionally, but George didn’t expect that blogging would help to drastically change his diabetes management. He had not seen an endocrinologist in over 10 years and knew very little about the latest technology, such as insulin pumps, or about complications. When bloggers discussed blood glucose levels, he realized he couldn’t answer the simple question, “What was your blood glucose this morning?” because he never checked. An endocrinologist appointment soon informed George that his glycosylated hemoglobin level (HbA1c, or A1C) was 12.5%. (The HbA1c is a measure of blood glucose control over the previous 2–3 months. Current recommendations are to maintain an HbA1c below 7% and ideally lower, or as close as possible to the normal range of 4% to 6%.)
“I knew it was time to take this disease seriously,” George said. He came across the phrase “born-again diabetic” and decided that was the name for his new blog. “It just seemed that now I had all these connections to people who cared and who understood.”
Almost a year later, George’s HbA1c was 7.6%, his 14-day blood glucose average was 134 mg/dl, and he was monitoring his blood glucose level 8–12 times a day. He now counts carbohydrates, and he visits an endocrinologist, podiatrist, ophthalmologist, and dietitian regularly. With the support of other bloggers, George also quit smoking.
George believes the most important parts of blogging for him are the feedback from posts and his relationships with other bloggers.
George said, “I remember one morning my blood glucose level was 455 mg/dl and I freaked out. I had not seen a [blood glucose reading] that high in a long time. I e-mailed a couple of blogging friends and got two e-mails back almost immediately telling me how I should handle it. I told my wife about it, and she was in tears. She said, ‘I am so thankful that we have them in our lives’ and I agreed 100%.”
What does George think people should know before blogging? “That they are going to need to put some time aside for reading!” He also said it takes a couple of posts before people begin to comment, so commenting on other blogs helps build connections.
“The main key is to be open and willing to put yourself out there. I think that is what makes for a great experience.”
Penny—My Son Has Diabetes
Ten-year-old Riley loves baseball, soccer, and his older brother Holden. Riley also has Type 1 diabetes, which his mother Penny writes about on her blog, My Son Has Diabetes. Riley was diagnosed in October 2005 at age three.
“I think I felt like most parents whose child has just been diagnosed with a chronic illness. I felt alone, scared, overwhelmed, and helpless,” Penny said.
While researching diabetes online, Penny found a chat room on the Children With Diabetes Web site (www.childrenwithdiabetes.com). A woman gave Penny the link to a blog post at Six Until Me. Penny says it was exactly what she was looking for.
“I found plenty of clinical advice, but what I was really searching for was someone who could understand what I was going through,” Penny said. Penny then typed “my son has diabetes” into Google, looking for someone else going through similar issues of raising a young child with diabetes. Penny decided to create her own blog to meet new people.
“My hope when I started the blog was to reach out to parents going through the same thing,” Penny said. “I really started the blog to help others, but what I didn’t know was that I was really helping myself and my son more.”
By discussing issues and experiences with other parents, Penny receives valuable comments from parents about trouble-shooting problems. The posts have also helped Penny work through the emotional difficulties of caring for a child with a chronic illness. Blogging helps her express and process her emotions, and reading blogs helps her see that there are adults with diabetes who are living happy and productive lives.
“When I blog, I get things out and then try to move on. By doing this, I am able to more effectively focus on Riley’s care instead of the emotions that sometimes feel like they are going to overwhelm me,” Penny said. Blogging also helped Penny trust her instincts on certain issues such as frequency of blood glucose monitoring. Riley’s endocrinologist had mentioned the possibility of monitoring less often when she saw they were checking an average of 13 times a day. Many bloggers commented that they check anywhere from 12 to 20 times a day.
“Most people also reminded me that I was Riley’s mom and that I knew what was best for him, so if I needed to test him 13 or more times a day to keep his blood glucose level regulated, then that is what I needed to do,” Penny said. The boost of confidence from other bloggers helped Penny overcome her doubts and truly recognize herself as the authority on Riley’s treatment.
Penny also uses her blog as a platform for advocacy during November’s National Diabetes Month. In past years, she has encouraged other bloggers to post a “Cure Diabetes” ribbon icon on their blogs. She plans to encourage more people to become vocal advocates.
Penny’s advice for people who are starting a blog is to be honest.
“Don’t worry about what others are thinking about what you say. You’re always going to have someone who may not necessarily agree with what you’re saying,” Penny said. “And don’t get discouraged if you think you aren’t making a difference. You might be surprised how many people are actually reading what you write.”
As for Riley, he started using an insulin pump in early 2006.
Rachel—Tales of Rachel
Rachel, 30, was diagnosed with prediabetes when she was 25 years old. After losing weight and then regaining it, she was diagnosed with Type 2 diabetes in March 2005, just before her 29th birthday. Rachel resolved to make decisive changes to lose weight soon. Her husband, Greg, has Type 1 diabetes, and Rachel’s knowledge of blood glucose monitoring and nutrition helped her gain control of her blood glucose levels through diet and exercise. Rachel already used blogging to communicate with friends, but diabetes was at the forefront of her mind, and she decided to start a new blog to discuss her new lifestyle changes.
“I found myself talking about diabetes quite a bit after my diagnosis,” Rachel said. “It had changed my lifestyle and led to some major decisions about my future, which changed many of my friendships. I needed to share my experience with a larger audience, especially after discovering a network of other bloggers with diabetes. I thought I could find people who might understand what I was going through by talking about it.”
One mission of many bloggers is to be an example to others who are dealing with the condition, and this was on Rachel’s list of goals. Rachel lowered her HbA1c from 6.4% at diagnosis to 5.4% through changes in her diet and exercise routine.
“Blogging about my success, as well as those occasional minor failures, motivates me to stick to good eating and exercising habits so that I can continue to influence others to do the same,” Rachel explained. “I have learned how lucky I was to be diagnosed with an HbA1c level of 6.4% and not a much higher one 5 or 10 years down the road when complications could have begun setting in.”
But living with diabetes successfully is not an easy mission, and Rachel blogs about both the good and the bad. One special post for Rachel was about an experience at work, when there were some donuts mere feet away from her. Rachel wrote that she did eat something sweet that day, but she managed to resist the donuts, and she was proud that she was able to overcome the temptation.
“By recording that experience in my blog, I have a reminder of a time when I fought off temptation,” Rachel said. “I think about it every time that I have to make a decision about letting myself have a sweet treat.”
Sharing experiences is an important aspect of why Rachel blogs and how she believes others can benefit.
“Whether someone is looking for a creative outlet or a way to share information, blogging provides an excellent way for people around the world to share experiences, whether it be the experience of living with a chronic disease or having a common interest,” she said.
Rachel’s advice to those who are just beginning to blog is to be cautious and to protect your privacy. She recommends thinking carefully before disclosing your last name or employer or posting photographs.
Safe, not sorry
As the number of blogs on the Internet continues to grow, new diabetes blogs crop up each week. In November 2005, approximately 30 blogs were listed on the Official Diabetes O.C. Web site (www.diabetesoc.blogspot.com), a directory of diabetes-related blogs. Currently, there are hundreds. The number of active readers of these blogs is unknown.
The essential aspect of blogs that separates them from standard diabetes education is the patient commentary on prescribed diabetes management tools.
“Quirky things happen,” says Tenderich. “You want to know what other people with diabetes have experienced, not just the doctor’s opinion.”
However, diabetes blogs should never completely replace medical counsel from a doctor or a diabetes educator; they supplement treatment by providing extra insights, guidance, and moral support.
“We also know that there are sites where people encourage very negative behaviors, like insulin omission to control one’s weight. This is downright scary,” says Polonsky. But he adds, “From the blogs I’ve seen so far, I am very encouraged that these will help people with diabetes to connect, to feel less alone and more hopeful, and to feel encouraged about how to live well with this tough disease. It is a wonderful development.”
In addition to responsibly writing accurate information and keeping tabs on the kind of advice shared, new bloggers should also be aware of their online presence versus their real-life information. Diabetes is by its nature a personal disease, but using a pseudonym and vague references or nicknames for locations can help deter unwanted attention and avoid conflicts.
When posting a comment to a blog, people are encouraged to share personal thoughts, but identifying details should be shared with caution. Most blogs do not require commenters to post an e-mail address or Web site, while others require such information but do not publish e-mail addresses. For instance, bloggers who use certain blog hosting services, such as Blogger, have the option of allowing anonymous or unregistered readers to post comments, an option that does not require the commenter to share his e-mail address. Some bloggers, however, do not like anonymous comments and require readers to register with the hosting service to post comments. (Registering is usually free.) Other blogs may not offer these features, and readers have to include their e-mail address in their comment. However, writing or commenting on a blog does not require you to use your real name, and people who are concerned about revealing their real-life identity are encouraged to create a pseudonym.
As more people add their voices to the mix, new discoveries about personal health are made. Joining an active community of bloggers who share information about treatment, research, emotions, and experiences is an excellent method to achieve the needed motivation to handle life with diabetes.