As an online patient community, we understand and embrace the fact that the Internet has helped us. The history of CreakyJoints underscores this. In 1999, we started our website as a message board with the goal of bringing people together, in a positive environment, to share strength and experience with one another — the goal was to make sure that NOBODY with arthritis would feel alone ever again. In 2016, as more and more people are using the Internet and our world is consuming more digital content, we are reminded of the importance of being vigilant about where and how we get our information and support. There are far too many sites that are exploitative, provide misinformation, or frame issues in a negative way.
Here’s an overview of the different types of websites to consider visiting:
Community/Blogs: Many members of the autoimmune community blog (or diary) about their lives and how they live with their condition(s). Blogging has provided a space for our community to share our personal experiences and to connect with each other. They serve an important purpose and many anecdotally share with us the fact that reading experiences of others on blogs helps guide them to their doctor to get a correct diagnosis and proper treatment.
TIP: Remember that when reading a blog by another patient, it is a personal experience. It might relate to you and it might not. A therapy that worked for one person might not work for you, and of course, vice versa.
Nonprofit Orgs: Groups like CreakyJoints, National Psoriasis Foundation and the Arthritis National Research Foundation provide vetted information. They also provide opportunities to raise awareness, engage in research and connect with other patients.
TIP: Check CharityNavigator.org before donating to an organization to ensure that your donation will go to the programs, services and/or research that you intend to support. Also note that CreakyJoints, as much as we love you, will never ask for (or accept) your donation. We’d encourage you to donate to one of our partner organizations instead.
Science: Places like WebMD and Medscape provide medically reviewed information. Sometimes when reading these sites, it can feel very overwhelming. Remember to jot down notes or key concepts so you’re prepared to talk with your healthcare provider.
Drug Manufacturers: Most drugs have informational website sites. These are created by the drug manufacturers and must conform to regulations, including posting the full drug “label.” This is the small print you may see on the back of a magazine ad, and it includes all of the information known and available about that product.
Miracle “Cure,” a.k.a. “Snake Oil”: These sites promise that if you try a particular diet, supplement, product or device (or if you stand on one foot during a full moon at 9:08 pm), it will cure you of your condition. Be careful on these sites.
Social Media: Tumblr, Instagram, Facebook and Twitter all provide space for our community to connect and share. Sometimes this can become a negative space and other times it can be very empowering. Make sure to share only what you are comfortable with the world knowing on social media. Nothing on social media is truly private.
How do you know what kind of site you are on? It’s sometimes hard to tell a legitimate site from one that is not.
TIPS: Start with the “about us” or “about” page. Look to see who is sponsoring it. Is it a for-profit or non-profit? Does the site have ads? What kind of ads are on it? Is the site trying to sell you something? Is the site written by an individual sharing their personal experience?
Remember: Your healthcare provider is the best resource. From nurses to specialists like rheumatologists, they are a critical part of your team. Use them as a resource.