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UhOh

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 #1 
I've had a range of responses from others (friends and family) from dismissal to supportive.

Everyone is entitled to their opinion and whatnot, but I was caught off guard by this person's response last night. She is a new friend, my age: 50. We have been spending a lot of time together, getting to know each other. I am currently taking a hiatus from my business due to health and other stuff. During the course of dinner (just the 2 of us), talking about various things I am dealing with, I tell her:

Me: " I have Lupus"
Her: "I don't believe in labels. I probably have it, too. But I don't have medical insurance and don't believe in modern medicine anyway. Mind over matter."

Is it me or does this seem insensitive and somewhat ignorant?

There have been other people (my hair stylist), who have also responded as though it's a contest.

Me: "I have Lupus."
Her: "I have Celiac."
Me: "Oh wow, how was it diagnosed?"
Her "I diagnosed myself and then it was confirmed by a psychic healer."

Am I missing something? Has anyone had bizarre reactions from others?

TXgirl

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 #2 
Super bizarre. If they are an unconditional friend.....they really are conditional...know you will never depend on them to help you go to the grocery store because you are exhausted and can't leave the house. They are good for when your up and can go to dinner and hear about their stuff. Not yours! Hair stylist. Who cares... as long as they can deal with your bald spots.

Just my humble opinion.
UhOh

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 #3 
Thanks TXgirl for your response, its true the fatigue is the hardest thing to manage and it seems the hardest for others to comprehend. This condition can be quite isolating.
TXgirl

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 #4 
My biggest complaint is pain over fatigue. But I have an amazing husband who is quick to say "go take a nap, I've got this". But pain I am a wimp. My hero are women like cake, taffy and Robin. They are strong...I'm weak. I only have UCTD. I'm not a lupe yet. I'm fighting to never be one.
Mr. Bun

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 #5 
I tell people "I'm fine, thanks"

got tired of hearing "I thought you were sick?  You look good"  "you just need to exercise more"  "You are prob just getting older" 

as long as I kept quiet, went to the parties, went to the baby showers, brought presents......everything was fine.  The minute I got really, really sick....POOF!
no more friends.

I have friends here.  true, true friends.

& my sister.....who is my best friend in the world.

xox
upstater

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 #6 
I am also UCTD...and discoid lupus.

I don't really talk about it to people. I've just been telling people if someone asks why I am sitting in the dark in my office that I don't like florescent lights....they give me headaches....or I have rosacea. Or I am finally being smart about the sun...listening to my dermatologist.

It's too hard to explain. And I guess I feel like it's no one's business.

But I also haven't had significant symptoms that have caused me to change my lifestyle otherwise. Some pain and stiffness....but it's transient and I just deal with it. I haven't really experienced fatigue, so I know I am very lucky there.

I think in general people don't understand autoimmune diseases. Maybe they think they are "fads". Some people might think they are excuses....or not real. Or not serious. Some people can't relate to things they don't understand.....or don't bother trying to understand.

My initial recollections of lupus were just that a neighbor girl had it. She was a few years younger than me. I thought - it was something only younger people got. Fast forward to age 49 - and what is happening to me? I didn't even know about all the other autoimmune diseases....other than scleroderma, because I saw a terrible Lifetime movie about Bob Saget's sister who had it.

So, yes....her comment was insensitive...and ignorant.
Mr. Bun

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 #7 
and ohoh?

yes....your "friends'" comment WAS VERY insensitive, ignorant & dismissive.  It is a glimpse into her character.

& I sure hope your hair stylist is good with the scissors.....cuz she's an idiot. 

Upstater is bang on.
Cakelady

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 #8 
When I worked, one day I had my door more closed then open so my bosses decided to give me a bad time. The way my computer was placed my back was to the door. They came in and asked why was i hiding. I turned around and I had a very glorious lupus rash on my face. Shocked the c r a p out if them. They asked if hurt then backed and closed my door. They left me alone the rest of the day
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TXgirl

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 #9 
Cake...didn't one time the doctors bring in a bunch of interns into your office to look at your "perfect" lupus rash? Crazy. But you worked with doctors. It would have been really weird if you worked in a bank. Haha.
UhOh

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 #10 
Thanks everyone for your thoughtful responses!
Cakelady

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 #11 
Yep my rhemy would send interns or doctors doing their residency in rheumatology down to my office to drop something off and I would hear how are you feeling today etc. and they would peer at my face. A few times my rash was really bad and they just kept coming in to the point my boss said he was going to charge admission. I gave him a dirty look. There was another time where has the morning went on my eyes kept getting more blood shot to the point my boss called my rhemy and he came down and he said he was scared of my eyes. So I called my PCP and left work and went to her office she then sent me to an eye specialist who was like wow I got to stay home the rest of the week :)
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taffylinden

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 #12 

I used to hide my diagnosis because I'm an intensely private person and also didn't want it to be part of my identity. But eventually, symptoms outed me, and now I'm glad. I never lie and tell people I have some other illness. It's too important that we bring lupus out of the shadows. Yes, I often have to explain what lupus is, but that's a good thing: it means one fewer person to say something ignorant to some other lupus patient. 

Your friend was rude and dismissive. Next time she says she doesn't believe in modern medicine, ask her if she uses eye of newt or ground unicorn horns when she's plagued with boils. Or if she says , "Mind over matter," tell her you do mind, and it does matter. Then get a new friend.

The comment I most hate from doctors is, "Wow." Always makes me feel like a sideshow freak. I had an experience similar to yours, Cake, when the entire dermatology dept. at a clinic crammed into an exam room to ogle at my rash. One actually said, "Whoa! Cool!" Then he saw my expression and apologized.

 

Cakelady

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 #13 
I worked at a teaching hospital and I am all for them learning and boy do I have stories. But I didn't have A choice when it came to telling my coworkers. I had been in my department for years and then I got pregnant and my world blow up so to speak. So everyone knew it wasn't something that I could keep to myself. Towards the end of my pregnancy I couldn't even eat and had TPN treatment which meant I carried a back pack that had an IV bag in it with stuff that looked like milk. It pumped food to my baby 14-16 hours a day. I was a mess

Has the years went on we got a new office person who wasn't so nice and one day someone needed to cover the loading dock. That meant someone had to be out there on their feet for a few hours and it also meant a lot of walking. I was already using a arm crutch by then. So my boss asked the other girl the new one to take over the loading docks. Instead of doing it she shut her office door and called HR. HR called my boss who got pretty p i s s e d. I didn't say anything i just got up and went to the loading dock and took care of everything my boss came out and said she would do it. But she had some dead lines. I finished and it took me a little longer then my boss said for me to go home for the day. My other boss had someone go get my vehical so I would not have to walk the mile to get my vehical.

I believe my illness made me stronger and it made me so compassion for others. I am naturally a compassionate person but this just reinforced it.

But going back to the room of interns. Most rhemys will go their whole career without treating someone with lupus. It was important to them to see first hand what a lupus rash looked like. Books/pictures can only show so much and we all know lupus is different for everyone

Sorry for being so long winded also sorry for any misspelled words or grammer errors.

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Baker1

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 #14 
I had a coworker who one day asked my why 7 was rubbing my knuckles. I told her that I had arthritis among other things and that my knuckles hurt. Her response was "Who the hell told you that you have arthritis?" My calm reply, because she was always looking to cause me trouble, was the Dr at the walk-in clinic, my pcp after most of the labs came back and my rheumy. She just looked at at me. I said believe me arthritis and everything else that is going wrong with my body, I wouldn't wish on anyone. She later learned about my lupus and said that isn't such a bad disease. I told her that there was no cure and that if I was lucky it wouldn't get worse, but I wouldn't count on it. I also told her that I took more meds than my parents combined.
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"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Rosie

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 #15 
When I first got 'rule-out' lupus (wasn't actually diagnosed for years) I just told people I had some arthritis. (Really I was sick as a dog about 1/3 of the time-extreme fatigue, arthritis in hands/feet, rash, headaches, dry inflamed eyes)....When I finally told a good friend she said: Oh my God! i know someone who died from Lupus. I was speechless.
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