No. 2 – Do Research, Don't Panic
This is the second of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
Mae West has been credited with saying, “Too much of a good thing can be wonderful.” When it comes to researching RA, too much can be just that – too much.
Research, research, research
My first reaction when I run across something new medically – drug, procedure, disease, whatever – is to research the heck out of it. I have some favorite medical internet sites that I not only trust to provide valid information, they have a pretty encyclopedic range of things you might want to know. These include WebMD, Mayo Clinic, and CDC.gov.
From there, I’ll go to websites that deal specifically with whatever I’m researching (like RheumatoidArthritis.net) and, third, I’ll start searching for patient blogs.
It can be like drinking from a fire hose.
When you’re dealing with a disease that can be as potentially serious as rheumatoid arthritis, you want to be well informed. It’s important to be an educated patient and learn the facts about how the disease works and what treatment options are available.
Learn to discern what's true and what's not
Even with true facts (and there is a lot of fake news about RA out there), it’s important to keep things in perspective.
As an example, depending on the source, it’s estimated that 50 percent of the people diagnosed with RA will become disabled within 10 years. That’s a scary statistic. But that means that the other 50 percent won’t. And the statistics we have today are based on historical numbers. Researchers are finding that with new treatments that are started earlier the numbers for not only disability but for things like knee replacements are changing for the better.
Sorting the good vs. bad information
So how do you sort out the wealth of good and bad information out there and how do you keep from panicking? Both of those things can be challenging but here are some things that have worked for me.
Trust your doctor. Your doctor’s office should be able to provide you with written/printed information and probably be able to recommend some trustworthy internet sites. Should you have questions about things you discover as you research, your doctor’s office is the best resource to explain how it might or might not pertain specifically to you.
Develop a list of “go-to” resources. Like me, you’ll probably want a good general site as well as some rheumatoid arthritis-specific sites that can provide not only hard information but also insights about living with the disease.
Ask yourself two questions: 1. Does this apply to me? And 2. Does this apply to me now? It’s easy to get sidetracked with all the information out there. But if you find yourself reading about hip replacements and your hips aren’t bothering you, then you might consider moving on to a topic that’s more relevant.
If it’s too good to be true, then it probably is. If there was a home remedy that would cure RA, then no one would have it. So when you read an article with a startling headline along the lines of, “This simple food can cure RA”, then just don’t even waste your time.
Understand the difference between medical sites and personal sites. A true medical site is very constrained about what it can publish regarding treatment or drug information. Personal sites such as blogs or stories written by patients can provide a full range of facts as well as personal experiences and these can be invaluable. With these sites, however, you have to realize that there is a lot of opinions involved. If someone posts that a certain drug is terrible – remember, that’s an opinion, not necessarily a fact. Just because someone has written/posted it, doesn’t make it true.
So, yes, be informed. You need to make educated decisions about your health. Getting good information from the right sites can accomplish that and help you keep things in perspective.
Did you have difficulty receiving a RA diagnosis?