How can they be so.....?

[Douglas]

I was more than slightly surprised the other day when a friend and I were chatting. He said something that shocked me so much I just had to pass it on to make the rest of you feel strange. He thought that Lupus, being an auto-immune condition, was just about the same as AIDs! There is a double misunderstanding if ever I heard one.
Just so you do not think he is some Alberta "cowboy", this is a man with three degrees, an earned doctorate and a former professor.
Excuse me now as I go either to laugh myself silly or just to pound my head into the furniture.
What wonderful misunderstandings have you run across?
Pax,
Douglas

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%"><span style="color:#FF9966">
Oh well wouldnt know where to begin !
same as you with the Aids thing....i should be lucky i have been told its a good job its nothing serious !...i look too well to be really ill....how can i be ill today when i was fine yesterday....it goes on and on...</span></span></span>

[AmandaB]

Hello,

Ah yes, the one I seem to get over and over is 'Lupus - that's cancer isn't it?' Er, no actually, it's not. Not even worth trying to explain I just tend to go quiet and change the subject.

Amanda

[Ms.Louise]

Good day to all,

It is for all of these reasons I don't tell many
people what my illness's are. I have come to appreciate ,
educated or not , that not many people know about
all of the autoimmune conditons. And unless they are
walking in the shoes , so to speak, they may never know.
So, I try to focus on what I'm doing to live as normally as
I can , despite my symptoms.
I find most will focus on my efforts , rather
than worry if they are going to catch anything from me.
And if they continue to ask what it is , I change the subject,
or just excuse my self and leave.

Ms. Louise

[lisade]

I know exactly what you mean. I've had this disease for a number of years and have managed fairly well. I have been pretty sick since Janueary and now people are really finding out that I have lupus and lord have I tried to explain it.
People are just unaware, most really have no idea what it is.
The other day I was on Opra's web site and it has a page that ask for show ideas, I was so tempted to fill out the thing and see if she would consider doing a show on it.

What do u think about that?? Think that could get us some exposure and funding for research so people might one day actually know what lupus is??

[helloos]

The only reasoning I can see between the two - aids and lupus - is that with aids, yes your immune system goes down and you can't fight off anything... maybe that is what he thought?

When a few people found out I have Lupus they thought it meant I could not drink alcohol because I would die. They got this from a soap opera. TV shows, years ago, gave the idea that Lupus just made you tired if stressed and could kill you. If you drank alcohol you ended up either in the hospital or dead.
Dramatic soap opera information. I laughed because I knew what soap opera they were talking about. I think tv has gotten a little better these days so maybe this will all change in the future.

[wifajax]

Hi everyone!

I think I'd rather deal with the people who don't know what lupus is than the ones who think they know of cures. A coworker had the nerve to suggest chelation after she saw a report about chelation and autism. As if the two are somehow related!! style_emoticons/<#EMO_DIR#>/hissy1.gif

Terri

[anna from nottingham]

hi all

my supervisor at university (who is a doctor!) told me that my lupus doesn't affect me! i couldnt believe his ignorance! sometimes i wish he could spend a day in my body and mind to see how it affects me!

but i dont think that means we should never tell people, as if we do that then people will never understand and we will feel more isolated and alone,

i think it is unrealistic to expect most people to know about the illness and understand what it is like living with lupus, so we have to try and see it from their perspective too and not take too much offence when they may seem ignorant! i think showing people 'the spoon theory' is a very good way of helping people understand, as i could really empathise with what the author wrote and was quite relieved to read it and know that there are other people out there feeling similar to me

style_emoticons/<#EMO_DIR#>/tongue.gif style_emoticons/<#EMO_DIR#>/smile.gif style_emoticons/<#EMO_DIR#>/tongue.gif

[LTich]

There are two that come to mind...One person thought Lupus was contagious and the another thought it was a venereal disease style_emoticons/<#EMO_DIR#>/laugh.gif Intelligence has it's limits but, ignorance knows no bounds.

[keebler]

<span style="font-family:Comic Sans Ms"><span style="font-size:12pt;line-height:100%"><span style="color:#000099">There is this woman at church that think lupus is Aids. style_emoticons/<#EMO_DIR#>/sad.gif She goes as far as not to come near you or touch you, if she thinks you have lupus. Another member of the church said their doctor was thinking she had lupus. (btw she doesn't) That is all it took for this other member to hear. She has been told countless times the difference but it is falling on deaf ears. I have never told her I have lupus, didn't want it spread around the crountry side I have aids when I don't. style_emoticons/<#EMO_DIR#>/sad.gif Some people just don't understand.</span></span></span> style_emoticons/<#EMO_DIR#>/hissy1.gif

[Rene]

Lupus is the opposite of AIDs. Lupus is an over active Imunne system and Aids is no Immune system. This is how my doctors have explained it to me. All I can say is "Lord Please help stupid people,no matter how educated they are!!! style_emoticons/<#EMO_DIR#>/bigsmile.gif God BLess you all!! style_emoticons/<#EMO_DIR#>/biggrin.gif

[angie1]

Hi everyone,

I think Lisa has a great idea about asking Oprah to do a show on lupus. She is seen around the world and very well respected. She could get the word out about the facts. So many people would benefit from it and even if it was only our families that watched, I think it would help.

Angie

[Fishaholic]

<div class='quotetop'>QUOTE(Douglas @ Jun 6 2006, 04:26 AM) Quoted post</div><div class='quotemain'>

Just so you do not think he is some Alberta "cowboy", this is a man with three degrees, an earned doctorate and a former professor.

[/b][/quote]

I am a doctor (PhD, not medical) too (would be called a professor in the US). I can safely confirm that expertise in one subject does not make you know anything at all outside that, despite (possible) high intelligence, nor does it give you any common sense. Ask me about maths and I can answer anything. But anything else and I can give you as silly and wrong answer as the next person. style_emoticons/<#EMO_DIR#>/rolleyes.gif As for common sense, I tried going through the door before opening it the other day. I also forget what day of the week it is. It may well be lupus brainfog, but some of my colleagues do much the same thing with no excuse other than being academics. style_emoticons/<#EMO_DIR#>/laugh.gif


As for silly stuff, what annoys me most is rumour. I became very open about my illness and made sure people knew about it after "discovering" via coffee room rumour that I was dying of cancer! Someone had found out I was using Imuran (azathioprine) and thought it could be used as a chemotherapy drug and therefore I had cancer and was dying. I rectified the misunderstandings in as cheerful a way as possible. But I will now answer anyone's questions about the illness and tell them about websites. I do fundraising for lupus (at a very low level) within my department. So people are aware. I think it better that way. Plus if I can stop misconceptions, it will help any future person they may meet with lupus.

[Christine UK]

Opera has been emailed many many many times...good luck..you will need it x

[somerset]

style_emoticons/<#EMO_DIR#>/afraid.gif Hello All

What a wonderful opening question! I have only told a very few colleagues that I have lupus - although it seems that a lot of people "know someone with that - isn't that just where you get tired all the time" If I go into work with my ever faithful tubi-grips on my elbow, knee, foot or elbow or the very rare occasion I use my walking stick I get the "what have you done to yourself" bit and now I just say "oh it will pass" because it just doesn't seem worth telling them what it is all about. Are there any other diseases that are like ours do you think? It seems that we are lucky having each other at the end of a keyboard to keep each other sane ! style_emoticons/<#EMO_DIR#>/smile.gif


Juliet

[CarolMc]

style_emoticons/<#EMO_DIR#>/biggrin.gif Hi everyone! On the other hand... I was explaining why my hair was so thin to my hair stylist the other day. I mentioned Lupus and she knew what I was talking about! I nearly fell of the chair! She is Eastern European and is struggling with health issues herself.( Yes, trying to get a diagnosis!) It's so rare for someone to know about it, that I went off in a daze! style_emoticons/<#EMO_DIR#>/laugh.gif
Be well
CarolMc.x

[raggedyann1]

Hi all,

for those that think Oprah should do a show on Lupus, search this forum with her name. You will find out what a total disservice she did for lupus patients the last time she did a show on it.

We will be better off supporting the lupus foundations in our various countries who spend a portion of their budget every year on Lupus Awareness. Take the time to write your local newspaper or get a local lupus group to sponsor a lupus awareness day.

Earlier this year in the USA there was a commercial with James Garner about lupus he did it because his daughter has lupus. Everyone that we can educate makes one more person familiar with lupus. I have been blessed because most of my family knows at least one other person with lupus and many of my friends at church know at least 2 other people with lupus. That is not to say I don't run into uneducated comments from people or others who stare at me not understanding. Because I am mostly seen in a wheelchair people know something is wrong with me so I try and explain when asked.

The easiest thing I have found that clicks is that my body is allergic to itself so it is attacking itself. That seems to give people something that they can grasp.

Karen