Too Much Information
When I was a kid with JRA I went to the doctor, he took my vital signs and looked at my joints, I got a blood test, and he sent me on my way with a bunch more aspirin to take. He would tell my Mom to make sure I did my exercises, and he would tell me to make sure to take my pills. We didn’t go home and google anything; there was no internet. We didn’t go to Whole Foods to get my supplements - health food stores back then were dusty, funny smelling places that scared me, and no one was talking about anti-inflammatory herbs or foods. We just didn’t know about any of it. I remember going to the University library at NYU where my Dad worked and looking up medical studies on rheumatoid arthritis, determined to find a cure, and leaving with a bunch of photocopies and notes that told me nothing. Medical science was a long way from any kind of real understanding of the inflammatory cycle and autoimmunity back then. When I was a kid, we didn’t have the kind of options, medical or otherwise, that we do now, which is why when I saw a National Enquirer headline proclaiming that the cure for arthritis had been discovered, my heart skipped a few beats. More than anything I wanted information about the pain and swelling that my body gave me every day.
Overwhelmed by too much RA treatment information
Now I have the opposite problem. There is so much information to weed through about medical and alternative treatments, and the challenge has become how much time to devote to trying to find treatments that will help me. At times, I feel like I have a target on my back because there are people waiting in line to sell me their product - the one thing that will help my body to heal itself, and companies waiting in the wings, showing up as I watch the television telling me that their medication will get me out dancing, playing golf, and picking up little kids whenever I want. I have to ask myself, "what is their underlying motivation"? And even if it is entirely selfless, I have to remind myself that we are far from figuring out this mercurial disease, so anything I try will be a best guess.
It’s ironic that I’d complain about too much information, given my past, living so long with so little. But it can get overwhelming when you google rheumatoid arthritis anti-inflammatory foods and find over eight million results. So, in the interest of sanity, I’ve decided to learn to manage all the information that comes my way. I put ideas into categories and that way I can decide if it’s worth looking into, putting on the back burner, or if it’s a thanks but no thanks tidbit. Right now, I have a medical treatment that I’m watching since it isn’t available yet on the back burner, a bunch of articles I’ve found on osteoporosis that I dig into when I have extra time so I can decide what to do about this diagnosis, and a few well-wishing ideas from friends that I’ve let go of.
Deciding when information is enough
I also have decided not to go searching for answers when I’m feeling depressed about my situation because as soon as I open the door to learning about RA I know I’ll be facing some fears. And finally, when I start to try something new I only try one thing at a time so I’ll know if it truly helps. Currently, I’m trying acupuncture to see if it will help my sleep and pain.
We are all lucky to have the problem of too much information, and I know at times we are all frustrated by the fact that with all the information out there, we still have to search hard for real, worthwhile answers to the problem of RA. For me, learning when to seek out answers and how to go about it has helped me to live well despite all the challenges that this disease brings. So, if you are yearning for more information, or less, I hope you find what you’re looking for!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?