When I was diagnosed with lupus, I found it extremely helpful to immediately organize all the information, appointments, and other things pertaining to life with the diagnosis. That, then, was my “Coping Skill # 1.”
Next, I set about finding out as much as I could about lupus, and especially how it was affecting me. Thus, Coping Skill # 2 was: Education
I was diagnosed before the Internet was as powerful as it is today. So, I turned to books (especially “The Lupus Book,” written by Daniel J. Wallace, MD) and information provided by my physicians and organizations such as the Lupus Foundation of America (www.lupus.org). I also found my pharmacist extremely helpful with explaining the various medications I had to take.
Now, of course, there are myriad websites, blogs, and other venues online where lupus patients, medical professionals, and others perhaps not as well-equipped or knowlegable, meet and communicate day and night. Some of the information given is good, some of it is not, and it’s a huge challenge all by itself to separate the proverbial wheat from chaffe.
For me, it goes back to my original sources: My doctors, credible lupus-related organizations, and my pharmacist. Also, for “how to live with it” kinds of advice, I’ve also found the wisdom gained by older lupies to be very valuable. I try to encourage other lupies to get their information from these sources, too, because inevitably, each person with lupus will encounter completely wrong information and, sometimes, very persuasive (read: pushy)people who insist they know better than any “credible” source.
Even now, I get unsolicited advice from people who insist that “there’s a cure your doctor doesn’t want you to know about,” or “there’s a country where they cure lupus” – both statements are incorrect. Some people say “there’s a lupus diet” (there isn’t), or “you need to boost your immune system” (bad idea because in lupus, the immune system is already boosted). And, I’ve also had people tell me, “you’re not cured because you’re not faithful enough to God” (hugely wrong-headed and completely opposite the point of living with a chronic illness).
For all of those statements, and for all the information I need to know, I go back to my credible, up-to-date sources. If knowledge is power, then the right knowledge is even more so!
Blessings for the day,