Making The Internet Work For You
The ability to connect with people, information, organizations, etc. online can be one of the most important things you consider while dealing with RA. It can make your life so much better or, depending on how you manage your online activities, so much worse.
The Internet and RA
How we use the internet today is vastly different than it was 20+ years ago when my doctor delivered my diagnosis of rheumatoid arthritis. I remember going to the local library and taking out books on the subject to try to get a handle on what this meant, from prognosis to treatment to management. Then I turned to the internet to try to find some answers. It was not easy to even find information, let alone reliable and helpful information. In addition, I began to participate in “Chat Rooms” and list serves dedicated to RA. I even became a “Moderator” of one of the “Chat Rooms” which was so fulfilling. I virtually “met” so many wonderful people who, like me, were seeking answers and support. The internet was where I learned about the idea of an RA support group which then led to me launching one locally a few years later.
Of course, as time passed, what we could learn and experience via the internet expanded to amazing levels. Today, we have so much available to us via the internet that, I would suggest, it can be overwhelming. Just as with news we follow online, we have to be careful to check our sources. I have some favorite and, I believe, reliable sources that are my go to “places” when I need answers. RheumatoidArthritis.net is one of those. The online newsletter, the Facebook, etc. are carefully monitored for accuracy. I am proud to be a contributor and have learned so much following the various articles written by other folks with RA.
Accuracy and reliability
Accuracy and reliability are not always easy to find on the internet. We have all seen what looks like professional, slick videos and/or articles promoting different strategies, medications, treatments, etc. It can be a challenge to sort through them and figure out what is true and real and what is “fake”… what is opinion and what is fact. In addition, you can become fearful and anxious if you turn to so many online sources offering information that you start to feel helpless, hopeless and overwhelmed about how to proceed. This is particularly true when you are first diagnosed and searching for answers and you discover that the prognosis runs from “you will be fine” to “you will be dead in six months”. As with most things in life, the truth is somewhere in the middle.
Here are some suggestions:
First, I ask my physician if there is something I read or see on the internet that is new and/or not offered on a lot of sites. He will tell me straight out if it is reliable and worthy of my time and attention. Second, I check with other folks online to see if they have heard of this information. If not, I alert them to this article, story or video and we work together to try to find the truth. Not always easy by any means. Third, as time has gone in, I now have something of an instinct about the reliability based on years and years of reading and watching various sources. So, trust your gut. More times than not, if I have a “sense” something is bogus, it is. Fourth, check if other sources you trust have also offered the same information on whatever the subject is, be it medications, treatment, etc. If only one site or source is promoting the “latest, greatest way to cure RA” it likely is false.
Opinion and Fact
A word about the difference between opinion and fact. For example, this article is my opinion and offers my suggestions on yet another aspect of managing RA. I am not telling you that what is contained here is a fully exhaustive article about online activity but rather my own experience with it. RA blogs, which number in the thousands and thousands are people’s own journals and thoughts about their journey. I did a blog for many years and read many, many others myself. They give me a sense of common experience and fraternity with others and also offer some great tips as suggested by others having RA. I do realize when I am reading them that they are that person’s perspective and that is important to remember.
Fact, on the other hand, comes from established well known sources or experts in the medical field related to RA. Check with your physician for a good list of sources you can rely on.
Once you settle on how best how the internet can serve you, it can and will be a wonderful tool for managing RA.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?