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Thread: Vent re: "Lupus not that bad"

  1. #1
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    Default Vent re: "Lupus not that bad"

    Hey guys!

    I just wanted to vent about a new doctor I met this week. Bleh! I hate "specialists" who don't specialize in lupus! I went to see this doctor on the advice of my GP and my rheumy for a specific symptom I have. Anyway, he doesn't know what he is talking about, hasn't read my file from the redundant questions he is asking me and has the nerve to tell me I should try to go off my meds as my "lupus isn't that bad". He based this on the fact that my biggest complaints (while on plaquenil and prednisone) are fatigue, lethargy, headaches, nausea, malaise and right now to a mild degree joint pain. Okay, so I know I am lucky compared to many but I have had other symptoms and am quite happy to be keeping them in check with my current meds. I see my rheumy again in 4 weeks, just saw my gp for a review of meds Oct 1st....whatever! He said that and about 4 other things that just got under my skin and that I haven't been able to let go of yet...anyway, I may not have to see him again and I truly hope this is the case.

    Just wanted to vent here as there is no where else I can complain about this and I know you understand. Feel free to share your own lame doctor comments....

    OR better yet, lame people comments.

    This morning...I was telling a co-worker that this was bad day (long week in education field with Halloween and special events). Just the kind of week where I get run down and symptomatic...so she was asking how I felt, and of course...being in my late 30s...she has to jump to..."Oh it's probably not lupus, you are probably pregnant." Nope, I am telling you what it is but thanks Dr.

    Okay, enough crabbiness....very out of character for me. I feel better now. Off to work!

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    [headsmack...]

    Yeah - "not that bad". 35 years ago it was a death sentence.

    You are very lucky to get diagnosed and get on treatment...without it, the Lupus MIGHT BE "that bad" - is that what they want? Would that make them happy? How about if you had diabetes - should you go off insulin because you seem to be okay?

    sheesh. The co-worker I can halfway forgive because people are simply ignorant - but for the doctor to make that kind of statement is flat-out unprofessional.

    I agree with your rant!!!!!

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    Oh Boy!

    I had a similar situation when I felt I had to tell my boss. His response..."Oh, thank God it's nothing serious. I know a woman...Blah..blah..blah".

    In my case it was a great response. I was concerned this knowledge might be career limiting for me, but apparently not.

    Sorry, you had to deal with this. We get it all the time. sigh....

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    "Not that bad" I hate that response from people. It's kind of condescending when someone says that to you, like they know your illness better than you.

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    Try feeling like you have the flu every freaking day for over a year, and tell me it's "not that bad" because you're, what, not in immediate danger of death?

    This is why I don't tell most people I have something going on. I don't think I could stand the stupidity of responses.

    That this came from a doctor, though, is just insane.

    (Ha! This post makes me a Puppy!)
    Last edited by Derrie; 11-02-2012 at 08:34 AM. Reason: to memorialize my advancement in the animal kingdom

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by bunny28 View Post
    "lupus isn't that bad"
    I highly doubt the people who have died from Lupus would share this doctor's opinion.

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    My darling daughter (read that with a lot of sarcasm) at one point earlier this year informed me that my Lupus isn't "that bad" and I need to "suck it up". She was referring to the fact that I wasn't doing things as quickly as she thought I should have. Things like remodeling my mother's house (RIP Mom) that "darling daughter" was living in at the time. At the time I was going through serious grief over my mom's passing which of course set off a lupus flare.

    I've also had people comment when I've shared that I have lupus, that I should be glad it is "only Lupus". As opposed to only what?
    "I'm going to get healthy or die trying"

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    I said this before, that my co-workers kept asking me about Lupus and when I put the Lupus Handbook in the break room, nobody read it.
    Last year when I started taking the MTX and I needed to have the day after the shot, off, that is when they asked me, what MTX was and when I told them, that it is Chemo, they all seemed to be a little more understanding. One girl said, " if it's chemo, it must be pretty bad". Ye think?
    But of course that was last year, they have already forgotten.

    Debbie

    PS, you doc is a moron.
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    A person who is unfamiliar with lupus (aka: ignorant of) will invariable say things like "it's only lupus" or "well, that's not that bad", or similar. I get the same thing with CVID, until I tell folks that each monthly IVIG treatment costs over 10 grand. Then they go "so you're one of them people that keeps making my premiums go up!"... |;^)
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Don't you love it, too, when people say stuff like "Oh, I know what you mean - get really tired and achy, too...it sucks getting old! [chuckle-chuckle]".

    I know they're just meaning to sympathize, but really - IT'S INCREDIBLY ANNOYING!!!!!

    Sometimes telling them I'm on chemo drugs and anti-malarials for the rest of my life gets the message across, but I still don't think they understand. Usually I don't even bother.

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