Like most people I tend to form opinions based on my personal experiences. My experiences with RA (outside my own body) have been obtained through blogs I follow and with people I work with who also have the disease. All of these people are well-informed, articulate, and generally both proactive and educated about their health care options.
I have been surprised over the last month or so to run across a number of people who don’t seem to have a clue about the disease, don’t have any ambition to find out more about it, and seemingly have doctors that have failed to educate them.
One in particular said to me, “I took the pills the doctor prescribed for a month. They didn’t work, so I’m just putting up with it. Everybody has aches and pains.”
[Pardon me while I stifle a silent scream.]
Excuse me for stating the obvious, but there is no cure for RA. In fact, there isn’t even a consensus of why one treatment plan will be miraculous for one patient and totally ineffective for another.
If there were a cure or even successful protocols for remission, I’d be pounding on my pulpit screaming, “Follow your doctor’s orders!” But there’s not. And until there is, I believe that it is a duty incumbent upon patients to be knowledgeable and proactive about their treatment options. Let’s face it, the doctors don’t have answers, they only have recommendations. It’s up to us to evaluate them and help choose the best option.
I even agree that sometimes the option is to have no treatment plan whatsoever. I recently went on a drug vacation to see if I could cut down on the meds. Both RA Guy and Warm Socks have documented their decisions to stop medications for a while. When things aren’t working, or they’re working so well you think you might be in remission, then it’s natural to wonder what life would be like without the drugs.
The point is, these are informed, responsible decisions. You evaluate how you feel, you consider your options, you discuss them with your rheumatologist, you make a plan and move forward. (Repeat as needed.)
As much as I would like to dictate to these people I’ve recently met who have either made no decisions or bad decisions because they don’t have the information, I can’t. The most I can do is hope to raise their awareness of the disease and its consequences. I hope you do that as well.
After my recent experiences, I see the RA blogging community somewhat as torchbearers. By sharing our stories and experiences and research, we are broadening the knowledge base to help patients make informed decisions and live better lives with the disease. Thank you all for being there. I know you’ve helped me immensely.
Thanks for checking in.