In all of the literature I have been reading about Lupus, one thing I keep coming accross is that, Dr.s are hesitant to diagnose or "label" someone with Lupus. Why are they soooo hesitant? Before I was diagnosed (at the point of near death), I had a GYN tell me after evaluating my bloodwork my ovaries had quit functioning because of a "problem" with my immune system, he refused to elaborate. I had been told at least 3 other times from my childhood on, that there was a "problem" with my immune system, but each time no elaboration. Lupus is not an extremely rare disease, especially among women. Several times I have had problems/symptoms which looking back, I can plainly see were Lupus related. No one said a word to me. I was never treated like a hypochondriac, (usually I would only go to the Dr. if I was certain I would die if I didn't, some people fear clowns, spiders, for me it's Drs.)I just wasn't given the big picture. The only reason I can come up with as to why a Dr. would refuse to diagnose is fear the patient would lose their insurance. Have any of you had that actually happen, just because you were dxd with Lupus? I would think it would be like diabetes, they can't refuse to cover you because you have it, right? Or is it more of a taboo shame thing? I read of how in some cultures Lupus is fairly common, but it is like a scarlet letter to the victim, they are expected to hide their disease and die quietly, as if they had done something evil to bring it upon themselves(like leppers of old). I don't think that is the case in the U.S.A. though, is it? what are your experiences?:confused:

Hi, RC. I have my own suspicions about some of these things, too! In my own case, I think my drs. were looking for "4" or more of the "4 of 11" to exist simultaneously, which is apparently NOT the way the classification criteria ought to be interpreted. So if a LOT of drs. interpret them that way, one can see how a LOT of people could look autoimmune-ish for years but fail to get a name for it. Plus I turned out to have the SCLE subset, not classic SLE, and that frustrated the Dx for many moons.

Maybe it's more about TREATMENT, not the label? Were you being treated all along? If so, then maybe holding back on a name is a kindness of sorts?

Like you, I heard plenty of broad hints over the years---but they meant nothing to me, as I never suspected I could have lupus.

Re: insurance: I had trouble getting long term care insurance, despite being stable at the pt. I applied. Finally procured, but for a higher premium than normal. But I had to really work for it (photocopies of articles to agent, highlighted & annotated to show all the bad things that did NOT apply to me).

Even after 6 years of "knowing", I still marvel at the confusion & miscommunications & how long it all went on. All my best to you, from Vee