Can Online Communities Help People Living With Chronic Illness?
There is no better feeling than finding a place where you feel like you belong. Maybe you find comfort at your workplace, or perhaps you enjoy spending time with family and friends at a place of worship. Communities can be found in big cities and in small towns, on college campuses and within senior living centers.
Support communities are especially important for those with chronic illness. Research shows there is a positive relationship between social support and chronic illness self-management. People who have a network of friends and family tend to have more positive outcomes while managing the ups and downs of illness, such as diabetes or heart disease.
Certain things might seem to be better if done in person, such as mediating an argument or breaking bad news. However, when it comes to chronic illness, more and more people are turning to their smartphones, laptops, and other devices for advice, story sharing, and coping.
The internet is now being used as a tool by millions of people across the continents to connect, share, and experience chronic illness together for a number of reasons. In a recent Stanford Social Innovation Review article, the authors identified four main reasons why people are forming healthcare communities online: new resources, new insights, shifting power dynamics between patients and providers, and data collection. Sometimes, what is needed goes beyond the paper printouts and in-person counseling, which is why online health communities are on the rise.
Diabetes is one such illness that requires a number of lifestyle changes after diagnosis. After the initial physician counseling, here are some online communities and platforms that you might want to consider that can provide quality support and care in times of need.
Facebook is a free social networking platform where over 2.38 billion people connect, share videos and pictures, and stay up-to-date on all things. A lot of activity and advocacy for people living with chronic illness occur in Facebook groups which represent online communities that are committed to a particular cause. The types of causes are wide-ranging, and bring people together who might be committed to making research studies more accessible to people of color or to creating an environment where caretakers of those living with multiple chronic illnesses can come together and offer support. A number of these groups are private and are meant to be a safe place to share stories, gain perspective, and provide comfort. The Diabetes Community might be a good resource for those who are newly-diagnosed with diabetes while Type 2 Diabetes Straight Talk can be useful for those who are looking for new ways to manage daily blood glucose levels.
diaTribe is an online publication that addresses what diabetes encompasses: from drugs and devices to research and regulatory decisions. While it might not be as interactive as other online sites, diaTribe harnesses the power of its strong leadership, advisory, and editorial teams—many of the people who represent and write for diaTribe are living with diabetes themselves or have made careers out of studying diabetes.
Anyone interested in “making sense of diabetes” can sign-up for email notifications and read a number of columns, including “test drive,” which captures personal experiences while using new medical devices, “moving the needle,” which highlights diabetes advocacy happenings around the world, and “adam’s corner,” which portrays a man named Adam Brown’s daily challenges of diabetes and his hacks and habits to overcome those difficulties.
BeyondType1 is an online community and network that is leveraging the power of social media and technology to help change the way the world sees chronic illness, especially those living with Type I diabetes. This not-for-profit organization hosts a number of online platforms, both in English and Spanish, that delivers relevant news, stories, advice, commentary, recipes, and outlets for those living with Type I diabetes and their families. The BeyondType1 app, which you can download onto your smartphone, is a place that brings together people from all around the world to ask questions and share thoughts.
BeyondType 1 has expanded and now offers programs and resources for those living with Type 2 Diabetes. On the BeyondType 2 website, you can read about real people living with type 2 diabetes as well as learn about the mental, physical, and emotional components of diabetes management..
Twitter is a popular social media platform where people from all over the world can communicate in short messages called Tweets (now limited to 280 characters). You can tweet about daily observations, follow famous movie stars, or engage in political conversation, all through your phone. Twitter is now being used by many people who live or manage chronic illness: patients, physicians, caregivers, and advocates. Cherise Shockley is one such individual who has used Twitter to advocate, communicate, and elevate the voices of those living with diabetes. As a person living with diabetes, she manages the account Diabetes Social Media Advocacy (#DSMA) and on Wednesdays at 9 p.m., she releases simple, thought-provoking questions to, as she states in the Twitter bio, “strengthen the community one tweet at a time.” People who follow her account can respond back with their answers and stories so that others can learn and grow with each other.
Written by Olivia Schreiber