You’ve probably reached this post on the Pact Blog through some form of social media. Writer Nancy talks about social media, and how it’s impacted the chronic illness community.
Social media is getting lots of bad press these days (for selling private information), but for those of us with chronic illnesses, social media is a lifeline to the outside world. Those of us who suffer from a chronic illness and/or chronic pain suffer from higher rates of depression than those without chronic illnesses. You may be isolated and not have a support system that understands your condition. Social media is a bridge that allows us to forge relationships with those who have similar conditions. Its also a great resource to find out information about digestive diseases and up-to-date information about the latest treatments.
Social media can also be a hazardous place; be aware of people who prey on vulnerable people, offering solutions or products. Understand the security of the media where you are sharing your posts. HIPPA privacy rules were established to ensure that your medical information is secured and that guidelines were set on who could review your health information. When you share your personal details on the social media, it is becomes available to be shared. Please note: advise given on social media should not replace guidance and advice from your gastroenterologist or primary care physician.
Below is a description of several social media apps and links to G-PACT content.
Facebook: There are hundreds of pages and groups available to those of us with digestive motility conditions, like Gastroparesis, Chronic Intestinal Pseudo Obstruction, or Colonic Inertia. Some are groups managed by G-PACT, but there are others managed by patient leaders throughout the digestive disease community. Generally, these Facebook groups are administrated by patients and not medical professionals. Be sure to review the specific Facebook page rules, pinned posts and announcements before you begin posting. Content posted in Facebook groups is normally for group view only; however, some groups may be public. For a list of Facebook groups sponsored by G-PACT, please visit G-PACT Communities.
Pinterest: This is a social media application where users can collect and share images with other users. The images can be organized into pinboards and shared amount the Pinterest community. Unlike Facebook, where you have friends, Pinterest has followers. To visit G-PACT Pinterest board, click on the following link https://www.pinterest.com/GPACTnonprofit/boards/
Twitter: This is a social media application where users post tweets to share information and communication. Tweets are 140 – 280 characters in length and may include links and GIFs. Tweets can be read by anyone unless a private message has been sent. Like Pinterest, Twitter has followers. Twitter hashtags allow the user to categorize and search for interests. Use #Gastroparesis to locate tweets related to Gastroparesis. G-PACT is available on Twitter at https://twitter.com/4GPACT
Instagram: This social media application allows users to share photos and/or videos that are shared with other users. Like Twitter and Pinterest, the application has followers and individual users controls who can see their content. If you are on Instagram be sure to follow G-PACT and the GP Pieface Challenge.
Yahoo Groups: Before Facebook and other social media apps, there were Yahoo groups. Yahoo account members could search for browse or search for groups of interest and join. Visit G-PACT Yahoo group at https://groups.yahoo.com/neo/groups/gastroparesis/info
Inspire.com: This health and wellness community connects health care professionals and patients. Users can post questions or search for information. Inspire provides access to health topics provides the user access to post content or ask questions from the community. To join the Gastroparesis and CIP community on Inspire, visit https://www.inspire.com/groups/g-pact-gastroparesis-and-cip/
The Mighty: The Mighty is an online health community that connects people with similar health conditions and topics of interest. Users can follow topics and/or contributors as well as submit their personal story. The Mighty can be access through Facebook, Twitter, Instagram and Pinterest and users can receive email digests about topics of interest. Visit G-PACT Mighty content at https://themighty.com/author/4g-pact-organization/
YouTube: This social media site is designed to share video content. Users subscribe to online communities and post videos or video blogs (vlogs). You will need a Google account to access YouTube. G-PACT videos can be found at https://www.youtube.com/channel/UCqEs1YHLc8hlh-vCXa9bDwA