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View Full Version : Lupus Is Our Own Fault Phooey!



angiern
07-23-2006, 02:14 PM
I was just reading an older post about how some people think Lupus is our own fault and often say very insensitive things. I recently had something similar happen to me. I walked into work with a pair of capri pants on. My boss made a smart remark about how white my legs were and I really need some sun. She is a registered nurse with a Bachelors Degree and should know a little something about the disease. I said nothing but was hurt inside. That evening I decided that this was a wonderful opportunity for some education. I have an educational book written especially for healthcare providers such as nurses and I took it to her and said to her that I could tell by her comment yesterday that she needed some education on Lupus. I also told her that I would appreciate it if she read the book prior to making anymore off hand remarks about me! Well she was certainly embarassed as she should be. It really burns me up that people are so insensitive sometimes. I am sure she would have never said anything to a parapalegic about getting some more exercise by walking, because their disability is very obvious. Sorry about the rant, but I had to get this off my chest.

jelywila
07-23-2006, 06:54 PM
I can relate with how careless, or assuming others can be. For a while I started using a cane, not for necesity, but for not "walking drunk", when I get dizzy, lose balance, or just plain walking stiff. I'll never forget being at a Wally world, after going through alot of stress and I felt awful sick and dizzy. I came to the cashregister, and was having such a hard time, dropping things and just wanting to go home and a couple of ladies in back of me "whispered" loadly that "there's rehabs for people like that, we should take her licence plate number in the parking lot!" I'm not going to repeat what I said, because it wasn't nice....but I did write a poem about it on the way home, LOL my personal medicine. If you don't mind, I'll share:

Relapse Morn

Eyes open and sun beaming,
But Yet
The familiar unforeseen feeling,
Prickling numb

Quick reference of last felt:
13 months
Another sentence gaveled and freedom gone,
Until when

Sluggishly move to carry on the day,
Disoriented stumble
Was it heavy leg or reality hitting the floor?
Denial smashed

Arming self for the ignorantly impaired,
The cane
"Drunken *hor*" glares and whispers are to come,
Their disease!

Open door before the world to face first battle,
Staircase decent
Exacerbated moves and already fatigued,
Only 8:00am

Glimpses of recent freedom to keep hope alive,
Teasing remittance
Acceptance usually comes back just have to get through
Relapse morn

Copyright April 2002 Jennifer Wilmot-Lavigne
The Poetic Link

Saysusie
07-24-2006, 03:09 AM
Jennifer; :lol:
Thank You so much for the poem, to which we can all relate! I am glad that you stood up for yourself and let those women have a piece of your mind. Ignorance and insensitivity are two of my biggest pet peeves amongst people who make assumptions about lupus sufferers. If educating them means that we have to hurt their stupid feelings or embarrass them in front of the world, then so be it!!

Again...Thank you for the "on-point" poem!!

Peace and Blessings
Saysusie

ihate2shave
07-24-2006, 12:29 PM
Great poem, thank you for sharing that. I've heard my share of snide remarks and I used to try to 'educate' people about sle, but now I make a wisecrack. (However if it were my boss, I'd be too chicken to crack very wise) Angie, I think you handled that beautifully.

Anyone think of a great comeback for people who make rude remarks about psych problems like anxiety/depression, i.e. hint you're having a pity party!?

Sheryl
07-24-2006, 08:15 PM
That was a very powerful poem - thank you so much for sharing it.

peach224
07-25-2006, 12:55 PM
Thanks for the great poem and post. I really needed to hear that others are going through the same thing. I have a co-worker who is particularly insensitive as well. I have been having a rough time the last few months, and have had to have some extra time off of work, dealing with some issues with pleuritis and migraines. She read some article somewhere that chest pains and migraines are linked to obesity, so she passed the article around the office e-mail, then proceeded to add her own comment that since I am "soooo fat", and that is "my own fault", that the problems I am having are my own fault and I should be fired for missing so much time from work. (And I have not wasted my time or breath explaining about weight gain from steroids or pleuritis and migraines caused by lupus). I was livid! My boss, thank goodness, was a little more sensitive, and told her to keep her big mouth shut in the future, but I was more than a little hurt.

jelywila
07-25-2006, 02:24 PM
Ugh!!! I think that is one of the worste, when someone says, "just need to lose some weight &/or excersise and it will be ALL BETTER" :mad: If they only knew!!!!

Sheryl
07-25-2006, 02:39 PM
Peach, that is absolutely appalling that anyone could act that way. She should get an official reprimand for discrimination, in my opinion!

ButterflyRN
07-26-2006, 05:53 AM
Peach that is awful! I agree with Sheryl she should be reprimanded.

ihate2shave
07-26-2006, 06:49 AM
Peach that is horrible! I hope she gets the message that being that hostile in the workplace is unacceptable! Are you other coworkers cool enough to stand for you when stuff like that goes down? I find that when someone's very mean like that, and your friends let them know they're not interested in hearing or seeing such put downs, they don't get the reinforcement they're seeking and the behavior stops.

Hang in there!

peach224
07-31-2006, 05:37 AM
Unfortunately, my co-workers are kind of in "stay out of it" mode. I spent so much time waiting for a diagnosis (it took 16 months) and being sick with "mysterious" illnesses, that it was kind of like the little boy who cried wolf. Now that I know what I have, I get the impression that the people I work with just expect that the doctor will give me medicine and that I will get all better. They can't quite figure out why that isn't happening. Nobody is being mean about it (except the one lady), but they clearly don't understand the big picture. Thank God for my boss, though, he seems to understand better than everybody else and she did get reprimanded. She has stopped being so mean, she doesn't speak to me at all now, which is just fine with me.

stjames13
08-02-2006, 07:39 AM
8)
Let's all be HAPPY of the fact that thankfully not everyone is as IGNORANT as that person is who said that!!!!!!

Don;t even waste your time with this person they are not only IGNORANT but self centered and doesn;t it suck that it seems the healthey people make the DUMBEST REMAKRS sometimes>?????????

We all know how we feeel as no one can tell us different !!!!!

ST James 8)