Facebook has been demonized tremendously throughout media, with claims that it causes depression, impairs social skills, creates isolation, feeds addictive behaviors, lowers self-esteem, and last but not least, one report claims it can cause eating disorders. The list goes on and on, further supporting the variety of accusations and reports that say Facebook does far more harm than good. People living with diabetes, Facebook is anything but evil, as those living with the two most common forms of the disease will argue that Facebook has become an immense source of support and much-needed connection in their daily lives.
But more, first, on the evils of Facebook: studies have actually documented that seeing posts about the lives of your friends can actually cause a person to feel worse about their own lives. Those most prone to this type of depression are teens, reports the American Academy of Pediatrics: “Researchers have proposed a new phenomenon called ‘Facebook depression’ that develops when preteens and teens spend a great deal of time on social media sites, such as Facebook, and then begin to exhibit classic symptoms of depression.”
While it can’t be denied that having friendships which revolve primarily through the internet could absolutely be detrimental to a person’s social skills for real-life interactions, and the reality that people are far more likely to be criticized and harassed for what they post and say on Facebook when abusers can hide behind a computer screen, Facebook is not all evil.
For people with diabetes, Facebook can be the source of immense comfort, support, kindness, generosity, and empowerment.
Due to the privacy laws of HIPAA, people with diabetes cannot rely on healthcare professionals to inform them of others in their community living with the disease. In the diabetes online community, Facebook has become a source of connection for thousands of people across the globe. Thousands. Some of these connections start through adults or teens living with type 1 or type 2 diabetes, others start through the parents of children with type 1 diabetes connecting with other parents. In general, however, the groups appear to have mixed themselves together, with a larger group of thousands that consists of type 1s, type 2s, teenagers and adults, and parents of children with type 1 diabetes.
Literally, thousands of people with diabetes are connected to each other personally, have met in real life thanks to their relationship on Facebook, and work together to increase the amount of support and advocacy available to those living with diabetes across the globe with events such as #DSMA Twitter Chat (which stands for Diabetes Social Media Advocacy) every Wednesday night at 9 p.m. EST, or DiabetesAdvocates–both of which were born largely due to relationships that evolved through Facebook.
Why is this online social community such a profoundly positive resource for a disease like diabetes? While each type of diabetes has its differences, the varieties of the disease have enough similarities and challenges to bring them together, but the community doesn’t exist just in specified diabetes “groups” or “pages,” they exist through straightforward friendships on Facebook.
Understanding the basics of diabetes is also important:
Type 1 diabetes, for instance, is an autoimmune disease in which the immune system will, at any age between birth and as high as age 50, attack the cells of the pancreas responsible for producing insulin. Insulin is a hormone essential to life in all mammals, as it is the only way glucose from the food we eat can be taken into the cells throughout the body that need that glucose for energy. Without insulin, any human being would eventually die.
Type 2 diabetes, albeit distorted greatly throughout greater mainstream media as pertaining primarily to obesity and eating “too much sugar,” is characterized most commonly in science by a dysfunction in the body’s ability to either produce or utilize insulin; however, it can also be the result of the liver’s overproduction of glycogen, too. In other words, while there is absolutely a correlation with excess body fat and insulin resistance which can lead to higher blood sugars and diabetes, the cause of type 2 diabetes is not simply about sugar and obesity. (If it were that simple, everyone who is overweight or obese would have diabetes and this is not the case.) Some forms of type 2 diabetes can be managed through changes in diet and exercise, while others require oral medications or insulin injections.
Today, there is no cure for either type of diabetes–and no, losing weight will not “cure” diabetes, it simply causes the symptoms of that person’s diabetes to subside, therefore making weight-loss one form of successful treatment for diabetes for some, not all.
One of the largest benefits of Facebook for those with diabetes are the lifestyle lessons and simple support that is shared around actual management of the disease. Gene Bertram, living with diabetes explains, “It’s put me in communication with other diabetics to find out how they are controlling their disease and improving their health.”
Richard Vaughn, who was diagnosed with diabetes in 1945 and continues to thrive today, says, “I did not know about diabetes online until 2006, so that was 61 years before my online experience. After consulting with other type 1 diabetics in the diabetes website support groups, I realized that I had much more to learn. At least 75% of my current knowledge about type 1 diabetes has been learned in the diabetes online community.”
As for the accusations that Facebook actually induces depression, those in the diabetes community have a different perspective:
Lauren Walsh, living with diabetes, explains, “I was diagnosed just over 2 years ago, I was 43 years with 3 kids and a granddaughter. This came out of nowhere, totally unexpected. I have truly found a wonderful community of others with diabetes that I can actually connect with and have even learned from! I love the diabetes online community!”
Michael Kenney, living with diabetes, explains that through Facebook he has been, “encouraged by others and been able to help others get answers to the same questions I had early on in my diagnosis.”
Donna Shuford, married to a man living with diabetes, explains, “It has made me realize I’m not alone. It has allowed me to reach out to other parents with diabetes with multiple children. I would be more depressed about my life without Facebook.”
According to clinical psychologist Dr. Jen Nash of PositiveDiabetes who specializes in treating people with diabetes, depression has proven to be two to three times more prevalent in people with diabetes. If having access to a free, simple resource like Facebook can alleviate some or a great deal of that depression, that’s a very good thing.
Sue Lebarron, living with diabetes, adds, “It helps me keep in touch with people that truly understand the frustrations of diabetes because they have those frustrations, too!.”
Shana Hammer, a mom of children with diabetes, says, “I was able to connect and contact other moms of multiple kids with type 1 diabetes–there are none in my area.”
Todd Williamson, living with diabetes, explains, “Through Facebook, I’ve been able to connect with other people with type 1 diabetes, which is a good thing. As many people as there are with diabetes, I’ve literally yet to meet another person with type 1 in my city. Nobody.”
Jess Buchanan, living with diabetes, adds, “It gives me a place to vent about diabetes and this is dually beneficial: First, friends who also have diabetes comment with things that make me feel better. Secondly, my friends without diabetes often follow up with questions. So basically it’s a chance to both empathize and educate. A win-win!”
In the end, though, both type 1 and type 2 forms of diabetes are constantly ostracized, mocked, and lectured by the general community. Accused of eating too much, being too lazy, being too fat, having given it to themselves or to their children for “eating too much sugar.” And of course, the constant lectures and inaccurate statements about diabetes in the media only adds to the lectures and scolding people with diabetes receive from the world around them.
While people with diabetes find themselves constantly being told by strangers and overly policing friends and family that they need to “eat less sugar, lose weight, and take better care of themselves,” through Facebook these people with diabetes can surround themselves with a community who understands the lesser known aspects of life that make this disease so challenging.
Common phrases and questions those in the Facebook community of diabetes hear include: “Why did you feed your child so much candy? You gave them diabetes!” or “My grandmother had diabetes…she lost both legs, and then she died” or “You have diabetes? You don’t look that fat!” or “Why don’t you just cure it by exercising more?” or Oh, you have diabetes? That sucks!” or “Well, it’s your fault for eating too much candy.”
None of the above statements are actually scientifically accurate observations about life with diabetes or how to treat it. Instead, they are merely misconceptions about diabetes perpetuated by mainstream media.
In reality, there is no one-size-fits all treatment for diabetes. Everyone’s insulin needs and oral medication needs vary and can change easily throughout their entire lives. The constant order to “exercise more often” comes with the overwhelming challenge of actually balancing one’s blood sugar levels during exercise, because exercise can easily cause dangerous drops in blood sugar if not carefully monitored, making exercise one of the hardest things to do more of safely.
Through Facebook, the people in this community have found allies in the daily challenge of balancing their blood sugars around insulin injections, exercise, nutrition, and the daily stressors of life. In life with diabetes, even an adrenaline-rushing ride on a roller coaster or white-water rafting can cause a significant spike in blood sugar.
Even Charlie Kimball, diagnosed with type 1 diabetes in 2007 and recently won the IZOD IndyCar series in Ohio in early August, said about the growing diabetes community online, “I was blown away by the amount of support and outreach. I know there are many people out there with diabetes, and I have met so many, but it still caught me by surprise how impressive and how significant the response was. It meant so much to me to hear from them.”
Kimball continues, “The coolest thing about the diabetes community is that you are now part of this tight-knit community that inspires, shares, and helps one another. If you can help someone with their diabetes, then you help them with their whole life.”
The best part about this online community? Facebook doesn’t require appointments or any 8 to 5 limitations–it’s always there. Thanks to Facebook, says Jennifer Davis, who lives with diabetes, “I know that I am not alone in my struggles with diabetes. I can go online at any time of day and get support.”
Lisa Stoler may have encompassed every benefit of Facebook for people with diabetes in her story, explaining that, “Before I found the diabetes online community in Facebook, I had been completely alone in my diabetes. I never knew anyone else that was like me and felt misunderstood all the time. Now I know there is always someone just a tap away that know what I’m going through.”
Stoler adds, “In the middle of the darkest nights when I’m dragging myself to the kitchen with a low blood sugar, using all my strength to get food, sit in a chair, and stay alive while waiting for my blood sugar to come up, I know I am not alone because of the community on Facebook. There are always at least 10 type 1 diabetes right at my fingertips. And after 42 years as a type 1 diabetic, I thought I know everything but realized I didn’t–I have learned so much from my online friends in the diabetes community, enabling me to take better care of myself and live a healthier, fuller life.”
While emotional “support” gained through chatting back and forth on Facebook may not seem like a vital ingredient to one’s health for most people, for those living with diabetes who know that every day comes with a variety of challenges impacting every aspect of life from breakfast to work to school to relationships to Christmas parties, it is beyond valuable. For this community, Facebook serves as an endless source of support, education, and empowerment in their lives that are impacted 24/7 by life with diabetes.
Written by Ginger Vieira