Is There Too Much Info On UC? I Think So
We’ve all consulted Dr. Google more times than we probably care to admit. My actual doctors even feel they have to warn against asking the Internet anything. And we all know why — you’ll inevitably find the one case that has a grim diagnosis, or the one situation where that weird symptom equals something serious.
Don’t get me wrong … I’m glad that us patients do have access to so much education around inflammatory bowel disease (IBD). A simple search can truly tell you anything you need to know, especially when newly diagnosed.
So what’s the problem? I’d argue there is too much information available at our fingertips. Some of it is well-meaning, informative, and well-researched; other articles are clickbait, often capitalizing on a buzzy “of the moment” word or condition to get eyeballs on their site. Have you ever read an article that does more external linking than actual information within its own website? I have, and it’s annoying.
So while the World Wide Web can be a great place to learn more about IBD, it’s also somewhat of a Wild Wild West in terms of who can publish what and with whom as a source of information.
I often come face to face with this issue when talking to peers who are navigating a new or potential IBD diagnosis. They’ve Googled around and found a lot of information on certain medications or symptoms and want the gastroenterologist to act upon that research. While I understand that there’s comfort in finding a medication that worked well for a friend, we aren’t all the same, and way too many articles tend to position one person’s experience as the cure-all. So while knowledge and self-education is possible and encouraged online, it’s also key to remember that not everything out there is true for every single person.
If you’re treading the deep waters of IBD information on the web, here are some tips (from a patient, not a doctor):
- Prioritize reputable sites when seeking medical information. Sites that center patient experiences like The Mighty are my favorite when I’m looking for first-person articles that can help me find comfort in other peoples’ stories. But when I’m looking for background on medications or new research on IBD, I head to medical journals, the CDC, or even the Crohn’s and Colitis Foundation for their recommendations.
- Remember that everyone is different. No matter what you read, it’s important to remember that your body is unlike anyone else’s body. Share what you learned with your doctor and see what they think based on your specific case.
- The worst-case scenario isn’t necessarily your story. I’m the queen of finding the worst possible outcome and convincing myself that that will be me. Don’t do that! Gather the facts that you want to review with your doctor, and keep an open mind that your journey is unique.
- Ask trusted friends and fellow patients what they recommend. A lot of my best resources have come from friends in the IBD community.
- Give yourself a time limit for Googling. The “rabbit hole” tends to form when we read one thing, click on another, click on that other thing, find that other one, research that one word … you understand. To avoid the endless scroll, set a time limit for yourself.
The Internet can be a wonderful resource when used responsibly. What tips would you add to avoid a doom-scrolling trap?