whenever I mention to anyone that I have SJS an autoimmune disease......

[gold55]

I get sooooooooooo offended by the typical response of others which is:
"ewwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww"!!!!
I think this is soooooo rude and I know most people probably don't even know they are
responding this way but I just know that I would NEVER EVER say this to anyone who has a basic cold and is dripping from the eyes and nose!!!!  I always listen and try to have empathy for those speaking about illness.....even if it's outwardly apparent.....such as a disabled person or a disfigured person.  I can't tell you how many "ewwwwwwwwwwwwwwwwwwwwwwwwwssss" I've received from others.  It's soooo hurtful!!!
thanks for listening.   

[lolo1979]

Well that is downright ignorant that anyone would give that response! And I mean ignorant in all ways ignorant is defined....uneducated, rude, etc.  Consider it their problem - NOT YOURS. 

I have hardly told anyone that I have an autoimmune disease...only those very very close to me.  For the others, I just blame my ailments on whatever else I can think of to use as an excuse. 

Plus, I'm convinced there are a lot more people suffering from autoimmunity than even know it.  So you never know Gold, those people responding like that could have their own autoimmune stuff going on that they don't even know about or realize!!!   

[A66eyroad]

I wonder why they have that reaction?!?  I have lots of nerve, so I would ask!

"Aren't you feeling well today?"

"No, I'm having a bad day today because of my autoimmune disease."

"Autoimmune disease?  Ewwwwwwwwwwwwww."

(Laugh slightly) "What??  What does that mean?"

_____________________ (Insert weird-slash-stupid answer here)

Tell me what they say!  I'm really interested to know what's so icky about autoimmune.

[Joe S.]

That may be better than putting fingers in your ears and saying "nananananananana"

[Carolina]

The reason is;

AIDS means Acquired IMMUNE Deficiency.

People think "AIDS" when they hear AUTO IMMUNE.

THEN, they don't KNOW what it, but sounds icky.

Often people with Sjogren's say they have something 'like' lupus and rheumatoid arthritis, which most people have heard of.

People are often very hostile to Chronic Fatigue Syndrome and to Fibromyalgia, as well.

I think they 'think' those are not real conditions, only neurotic conditions.

I never say auto immune, and since I'm always negative for everything related to any AI condition, I just say I have something that makes my eyes and mouth very dry, and a bunch of other unpleasantness.

People mostly care only about themselves and things that happen to people they are very close to.

And even then they often don't give much support for their own families for chronic conditions that can't be treated and cured quickly.

Ask any family with a disabled child or adult, people are just rather self centered.

This is not to say that people are 'bad', just that they are human.

We expect a great deal more logic and sympathy from people than most are capable of managing.

HOWEVER, that's what MANNERS are for, smoothing over times when logic and kindness falter.

You have run into some RUDE people.  I'm sorry if they are your friends and coworkers, gold.

I wish you patience and kindness in response to rude people.

Hugs

Come here and tell us everything, please.

Elaine

[Narablueeyes]

Had a new co-worker introduce herself to me the other day and while we were talking, I got weak and said that I needed to sit for a while.  She walked me back to my office and asked if I was okay.  I said sure and she asked if it was okay to ask about what my problem is.  I told her I have an auto immune disease and explained it to her.  Craziest thing happened next.  She said, "As a co-worker and newfound friend, what do you want me to know in case something happens where you need help?  Any thing that would help you?"  she noticed the shocked look on my face and then smiled and told me her mom had lupus.   

[LisaMarie]

What I've found is if I say anything, they ask about the symptoms and everytime I say about my dry eyes, I hear, "Oh, I have that."  When I mention the extreme fatigue, "Oh, me too.  We aren't getting any younger."  I've tried to explain that there is a difference between fatigue and being tired.  Fatigue I tell them is when you cannot stay awake no matter what.  And it isn't just staying awake in the physical state but mentally too because even though I'm fatigue I cannot sleep.  So I mentally shut down and cannot move.

I talk of pain and they have pain.  I start to think that everyone around me must have an auto-immune disease. 

Then I see the difference.  They are so functional.  They go out drinking and partying.  They attend school activities and kids' activities all the time.  They work, they shop, they are so active.  That is why they feel tired, maybe some pain, etc.  I don't get to do that stuff because I am tired and have pain.

I'm to the point that I'm not going to explain it unless I really feel I need to do so.

Narablueeyes - I love the new co-worker's response!  Gold star for her!

[A66eyroad]

I've said this here before:  The difference between the fatigue WE feel and the fatigue THEY feel is like the difference between having clinical depression and having a "blue day."

Maybe we should say we have clinical fatigue.   

But I swear, the next time I tell someone about one of my symptoms and they tell me they have it too, I'm going to say, "Really? Who's your rheumatologist?"

[A66eyroad]

...and NaraBlue --- I'm so glad your new co-worker is one of the good ones!

Curious (as usual) as to what you told her in answer to her question.

[Meld256]

Well, yeah, gold,  I'd be offended, too!  Eeeeeeeeewwww sounds like a response from a 12-yr-old and not a very well-mannered one at that.

I don't use the word "autoimmune" because people's eyes glaze over. I try not to give an explaination of symptoms for the very reason that they'll say "yeah, I have that."  "REALLY? You have that?!"  I don't think so...

I'm still tweaking my words, depending on who it is, but now I might say "I have a medical condition in which I have joint pain and fatigue; it affects my eyes, mouth and other things. "  Sometimes I mix it up a bit.  They usually don't want to know more. If they do, I tell them Sjogren's and still make it short and sweet.

A66ey, I like the phrase "clinical fatigue" because we cannot explain to someone who does not have debilitating fatigue what it's like.  I don't think one *gets it* unless they've experienced it!  Sometimes I say "debiltating fatigue"- it gives a bit more *oomph* to just the word fatigue.

But, I like your idea of asking who their rhuematologist is!

Elaine, you explain things so well.   

When I was diagnosed with Fibro. and Chronic Fatigue Syndrome and was going through my SS Disability process, (before my Sjogren's dx) there was an extended family member who actually told my MIL "Well, I guess if you can get disability for that, I guess you can get it for anything."     Obviously they hadn't seen me on the couch for 2 months straight, in pain, 24/7.  I had to decide to not let their ignorance hurt my feelings, but it really did at the time.

[Meld256]

Nara,

Bless that new co-worker of yours!    She has a more real understanding if her mother had Lupus. I'm curious about how you answered, too, or were you too shocked to speak?!

[Narablueeyes]

"Who's you're rheumatologist?"  Good one!!  I'll remember that one for sure!

As for what I told her, said that I have Sjogren's and she actually knew what it was but it was a limited knowlwdge.  She asked questions about it JUST being dryness and i said no, its more  and I told her about my neck/shoulder issues and the overwhelming fatigue I've been experienced the last few months. 

[sewandsew]

Carolina hit it on the head.  They hear "immune" and immediately think AIDS.  I like clinical fatigue.  Good one.  Sometimes I just say "medical issues."  No one wants to hear about it anyway.

[paperdoll]

Gold... I too have had really mean-spirited or non-believing looks and responses...

I've shortened it down to
- if they are worth your precious time -

"I have a rheumatic arthritis disease - yes I am kinda young, but you know, even kids can get arthritis."

Then they usually ask what is the name of it...
"oh it's fine - how are you?"
or
then proceed from there if they are
*worth your time and precious energy*

"Sjogren's Syndrome... thankfully they are studying it in at UPenn, San Fran... Brazil, Japan, Africa, Japan, USA, Netherlands, Great Britain
- oh and that cool World Champion Tennis Star Venus just got diagnosed with it... and that Irish Soccer Player..."
(then I know they will research it)

I hope my take/contribution helps honey!

[Patze]

Wow Gold, did you tell that person to come back when their parents teach them how to act around ill people?  Jeppers! 

Most people get the deer in the headlights look until I explain it, but I had one person that told me to my face that I will never be as sick as Venus Williams is.   After picking my mouth off of the floor, and remembering that I must not hit the other children in the sand box, I stood there and said "oh, really?  And we know this how?  Crystal ball?  Fortune teller?  What?"  The person turned around and went back to their spaces - mumble, grumble, and some swear words I won't repeat (yes, I did put some quarters in the "swear" jar that day! ).  Jeshhh, some people!

Hugs to you all who have to deal with people like this....and heres to hoping that they figure it out or at least look it up!

Take care of yourselves -

Patze