11. Social Media Use and Connecting with other SCAD Patients
Social media platforms (like SCAD-specific websites and FB groups) can be valuable resources, but sometimes there are pitfalls of using patient-centered social media. It’s helpful to know the pros and cons of social media, as well as tips for using social media wisely and other resources.
Community: Since SCAD is such an unusual diagnosis, having an online community can be informative and comforting.
Support: Some social media sites provide the opportunity for peer-to-peer support, which might be helpful, especially if it is from a peer who is further along in her recovery than you are.
Awareness: Social media sites can help raise awareness of different issues relevant to SCAD survivors that we might not know about.
Resources: Social media sites can share information about resources for SCAD patients. (e.g. new tests and procedures, new guidelines for SCAD patients, publications or medical resources).
#fakenews: Some social media outlets provide responsible summaries of scientific literature on SCAD, and even include links to those articles. But some information on social media is anecdotal or of poor quality and may not be relevant to you.
Overwhelming: Some SCAD survivors have felt overwhelmed with others’ difficult stories, and the amount of information and recommendations shared on social media.
Biased: Some sites are interested in promoting a certain cause or organization, and may not present the whole story.
- Small Sips. Especially at the beginning of your SCAD journey (but later, too!), take it slowly on social media to ensure you don’t get overwhelmed with information or others’ stories.
- Check the facts. If you find a piece of information that seems inconsistent with what you’ve learned about SCAD, compare it with articles from the scientific literature, or information on other websites that seem to incorporate scientific information. You can always ask your doctor, too!
- Know where to go. If you have medical questions, direct them to a health care provider, not Facebook friends. Similarly, if you are struggling with the emotional aftermath of SCAD, which can be formidable, talking to a behavioral health professional (preferably someone who is familiar with SCAD) is more constructive than using social media for help.
- Take a break. Some survivors find it helpful to take breaks from social media - even SCAD-specific social media - to allow them to focus on their own recovery and their own lives. Don’t worry, social media will still be there when you’re ready to come back!