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Summary/Abstract:
Knowledge is power, especially when living with chronic conditions or disabilities. We live in an age where all the world’s knowledge is at our fingertips. Trying to navigate the world of online medical research can be hard. Here are some of my best tips.
I was diagnosed with Ehlers-Danlos Syndrome (EDS) in November 2020, a genetic connective tissue disorder that was still considered rare at the time. I started showing symptoms years prior and none of my doctors could figure out what was wrong with me. I then found a video on YouTube talking about EDS and realized a lot of my symptoms matched up.
I went to my primary care with a bunch of research, he had never heard of EDS before, but he agreed I matched the criteria and diagnosed me. He didn’t really know what to do to help me, he referred me to a few specialists and said he would listen to whatever I told him I needed.
Research and knowledge became my power, not only in getting a diagnosis but in every step of my treatment since. We live in an era where all the world’s knowledge is at our fingertips, but knowing what to do with that knowledge is hard. The internet is scary. Being sick is scary. Trying to combine both is a terrifying challenge sometimes. So here are my best tips on how to navigate the world of online medical research.
Utilize social media and online communities: Nobody knows more about a disease than the people living with it. From initial research to trying to find new treatments, talking to others living with the condition gives a lot of insight and helps with loneliness and isolation. In-person support groups can be a fantastic tool, but they aren’t always accessible. Join online forums, look for medical-based social media platforms, or find accounts on big social media platforms.
Find credible sources: Great Aunt Beth isn’t a credible source for your stomach problems. She may give some good advice and a good starting place for research, but don’t leave it there. Do more digging. Some hospitals have great websites like Mayo Clinic, Cleveland Clinic, and Hopkins Medicine. There are some government-funded sites, like the NHS or CDC websites.
If a website ends in .gov .org or .edu, you know those are credible sites. Other things to look for in credible sources are who is the author, if there’s any advertisement and what it looks like, when something was published, and how well designed a website is.
Don’t be afraid to look up terms you don’t know: The downside of having a rarely diagnosed condition is that all the research online is written for doctors or scientists who went to school to study these topics. I spend a lot of time looking up terms. An EDS diagnosis follows a diagnostic criteria sheet and when I first found it, I was greeted with words I had never seen before. Unexplained striae distensae or rubae: stretch marks. Bilateral piezogenic papules: small hernias of fat tissue often found in the feet or ankles. Arachnodactyly: long, slender, and curved fingers. Not knowing so much and having to spend a lot of time researching can be frustrating, but it means we’re learning more and more.
Don’t Jump to Conclusions: Experiencing fatigue doesn’t necessarily mean you have terminal cancer and two months left to live, no matter what WebMD says. Do thorough research and talk to medical professionals (when available). No matter how much research we do, consulting with medical professionals should still be an important part of our medical journeys.
Find good a good care team: I know, this one is much easier said than done. With barriers like finances, insurance, wait times, and location, finding good doctors and having regular access to them is difficult, but having a team of good doctors that we can communicate with helps to make our disabilities and conditions manageable.
Using the internet to find providers can be a great tool with websites like Healthgrades.com and Medifind.com that allow you to look up doctors in your area and their reviews. You can check the star rating as well as written reviews from patients to get a sense of who the provider is. Keep in mind a few qualities you like to see in your providers when reading reviews like compassionate, efficient, or knowledgeable.
Your doctors and care team should be people who listen to you and take your concerns seriously. They should be willing to educate you and answer any questions you have. They should be people you trust.
Being sick isn’t fun for anyone, whether it’s a cold, a chronic condition, or a terminal disease. Life with disabilities and illnesses can be incredibly difficult, but having knowledge empowers us and aids us in our journeys. Good luck with your researching adventures!