I’m a researcher. I always have been. That’s how I ended up studying political science. When confronted with complex problems, I try to find some different perspectives and weigh the options. The problem with researching health issues is the abundance of bad information and weird stories on the internet. Another problem is that you might miss a whole bunch of great information by using Google. I, for example, did not start reading blogs until this year because they didn’t show up on my particular searches. An article (“Logging on for a Second (or Third) Opinion“) about online research from The New York Times prompted this entry about a topic I can’t resist.
John Schwartz, the article’s author, explains that “paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search.” There’s good news, though. People are starting to help each other out more, and the good folks who run Facebook groups, support and information websites, blogs, YouTube channels, etc. are the ones patients can turn to for everything beyond their diagnosis. All the trouble that comes from everyday living with a chronic illness is chronicled online somewhere.
To find it, I recommend starting with Facebook or a local in-person support group and working from there. Ask leaders and peers if they know of good online resources, join groups and follow pages on Facebook, and eventually you’ll just keep finding good things. It just takes a good starting point. Since you’re already reading a blog, please go to my Links page. Then when you’re done, type your disease into Facebook and click on everything that looks fun.
I have a warning for you, and I hope you won’t forget it: if a story or bit of information gives you a panic attack, take some deep breaths and see if other people back it up. If they do, then in your search you’ll find advice on dealing with whatever problem got you worked up. Never assume that life is going to be horrible and you’ll just feel defective forever. I did that. Then I started learning from people who have been through similar situations who acknowledged how awful illness can be, but helped me find ways to get through it. I may be a mess, and you may be too, but we are in great company.
Back to that article. It has a section of suggested reputable places to search for medical information. Of its suggestions, I like Mayo Clinic and large organizations like the Crohn’s and Colitis Foundation of America (CCFA) It does not mention to check out the websites of teaching hospitals. I’m biased, so here’s a link for the University of Chicago’s online resource library.
I hope your search for information and encouragement is fruitful, and I wish you the best of health.