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View Full Version : Vent re: "Lupus not that bad"



bunny28
11-02-2012, 07:36 AM
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!

SleepyInSeattle
11-02-2012, 07:58 AM
[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!!!!!

running girl
11-02-2012, 08:01 AM
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....

Mica
11-02-2012, 08:14 AM
"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.

Derrie
11-02-2012, 08:33 AM
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!)

rob
11-02-2012, 10:56 AM
"lupus isn't that bad"

I highly doubt the people who have died from Lupus would share this doctor's opinion.

ruziska
11-02-2012, 11:17 AM
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?

debbie-b
11-02-2012, 01:36 PM
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.

jmail
11-02-2012, 03:13 PM
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!"... |;^)

SleepyInSeattle
11-02-2012, 03:56 PM
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.

bunny28
11-02-2012, 04:02 PM
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!)

I love that explanation.

Thanks everyone for the support.

Nonna
11-02-2012, 05:34 PM
This is a good thread. Let's keep it going.

I don't have a story at the moment but have enjoyed the others

Mica
11-03-2012, 10:56 AM
This is a good thread. Let's keep it going.

I don't have a story at the moment but have enjoyed the others

Oh I have another one, last month I ran into a guy I went to school with. He says "Oh you still have that sick thing?" really it's not like it was a secret what I had, and I went to a super small school so everyone knew. I was like "Really? I can't believe you asked me that?"

bunny28
11-05-2012, 10:10 AM
Oh I have another one, last month I ran into a guy I went to school with. He says "Oh you still have that sick thing?" really it's not like it was a secret what I had, and I went to a super small school so everyone knew. I was like "Really? I can't believe you asked me that?"

Oh nice one!

This isn's mine but a former classmate of mine recently posted this on facebook.

She ran into a friend she hadn't seen in a while and the friend said " OMG,are you okay? Are you on prednisone?" and she replied...."Ummm, no I am 8 months pregnant."

Made me laugh out loud that day!

ruziska
11-07-2012, 01:53 PM
May I add my topic related vent to this? Thank you! As I've said before, I work for a company whose business is the business of disability (medicare, medicaid, social security, advocacy, etc). As Office Manager it is my job to do intake. Ok, no problem. I'm polite, I am caring and concerned, blah, blah BLAH. I don't judge (don't get paid enough for that!) I just take the information and channel it accordingly. ANYHOW... here's the point of this vent: I get people who want to go on disability because "their back hurts". Not "I've been in a horrific accident and totally destroyed my back" or "I have a back ruining REAL disability" or any other legitimate DESERVING reason. No. Their back hurts and they just don't want to work. I actually had one person on the phone tell me that I couldn't possibly understand how hard it is for them to work. My response? and I don't share it often. "I have Lupus. I have migraines. I have high blood pressure, tinnitus, restless leg syndrome and a neck that looks like a game of pickup sticks and if I jar it or turn the wrong way I and suddenly in black out agonizing pain. I also work 40 + hours a week and take care of a household." Click. Please note that I'm ALL FOR those who truly need it and deserve it to get SSDI and any other assistance they can get but I'm totally against people trying to scam because they are just too blasted lazy to work for a living! So ends my vent. I thank you.

deannegirl
11-07-2012, 03:32 PM
I <3 this thread more than I can express!

Here are some of my rants:

- My younger sister asked me to watch my nephew one night last month on last minute notice, from 4pm - 1am, during a horrible flare and while I had Walking Pneumonia. She showed up two hours late, arrived back late and when I was short with her, she snapped back, "Oh come on, you can't really feel that bad, stop dramatizing! I have Fibromyalgia and look at ME. Take some Emergen-C, I'm sure you'll be fine!"

- I went to Urgent Care 10 months ago for another presumed pneumonia diagnosis. On my chart I gave the nurse my abbreviated medical history including Lupus and that I'm on Plaquenil. When the PA (she was like 27 years old with gum in her mouth) came in to the room she didn't even exam me and just said she would write me an Rx for antibiotics. I asked her if we should do a chest xray to see if I have pleuresy/pericarditis that could be contributing to my symptoms due to my SLE? Her response, "if you're just on Plaquenil your Lupus isn't bad enough to worry about it".

- Often when I walk up the stairs of my office I limp and struggle due to the horrible pain in my knees. People are constantly asking how I injured myself or what's wrong. Not wanting to go in to an explanation of a disease that few people have heard of let alone understand, I give a sarcastic reason and they eat it up. "I won first place at the Rodeo over the weekend!" "My barista had it coming to her for getting my order wrong again!" "Haven't I shown you my AARP card?" Most people who see me limp on the stairs now think its a big game, lol.