Searching for multiple sclerosis information online can be overwhelming, even for the most experienced Internet user. After I was diagnosed with MS, I had no idea what information to trust online, and my lack of prior knowledge about my condition made the search even more challenging. When entering “fatigue” into a search engine, for example, I suddenly found myself with over 114 million results to sift through!
When researching a chronic condition, it’s hard to determine what online resources are relevant and accurate. This process can be stressful particularly because the information you find can impact treatment decisions, and ultimately, your quality of life.
To help you avoid some of the challenges I’ve faced, I’ve compiled a few ways to make your searches less painful and more productive!
Start with Patient Organisations
Patient organisations’ websites and message boards are often a good place to begin. In addition to up-to-date information, these online resources offer valuable background about complex diseases like MS. Organisations’ message boards can also be a safe space for highly personal discussions. Most organisations have a moderator dedicated to enforcing clear guidelines, removing inappropriate comments and answering questions.
Some Sources Are Worth the Read
My very first question to Google was, “What is MS?” After pouring over pages and pages of information on Wikipedia and health websites, I realized that not all the information I was finding was correct, let alone comprehensive. As a journalist, I wanted to know the scientific or medical sources for what I was reading. When learning about a new health topic online, ask yourself: What source is this linking to and is it trustworthy? Who initially published this information? When no mention of the source can be found, it’s okay to be skeptical. Discard unsupported claims or statements, they could be pure speculation.
Find Your Voice on Social Networks
While social networks may not seem like a natural resource, they provide a place for people living with MS to share their unique experiences, ask questions and share valuable insights from others who have faced similar situations. Research and other news spreads quickly among social networks, so take advantage of knowing the latest and greatest news about MS.
Advertisements and Wild Claims Not Welcome
When gathering information, one thing I watch for is articles that trend too positive, or offer a glossy list of advantages of a particular product. This can be a sign that the piece is intended to advertise something, rather than inform. Be suspicious of anyone online trying to sell all-healing snake oil. We don’t need a miracle cure, we need information.
As you try to learn more about a chronic condition, searching online can be a difficult experience, so I hope these tips help build your confidence in deciphering trustworthy resources! Remember, not every source is a good source, but the Internet can yield valuable results and answers relevant to your life with MS.