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

[artsyamerican]

I too have encountered people that say they have every symptom I have....AND they still work!!! Made me feel like a whimp or something.  But last night as I was talking to a friend about what's going on with me - she looked mortified...I included the facts the lights in the auditorium were stabbing my eyes like daggers! She really was concerned.  When the orchestra began playing I reflected on the reality of my situation (I think you numb your brain after a while in order to survive).  Autoimmunes - no matter what flavor - are no walk in the park! I think the other persons reaction has more to do with their character than our delivery of info. 

That's why these blogs are so helpful! We ALL know how crappy each of us feel!

[Autoimmunity]

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?"

Amen!!  That's fabulous!  So tired of hearing I wouldn't have RA if I exercised more (or fill in ignorent comment here).  Wow, really?  And where did you get your medical degree?  John Hopkins?? 

[paperdoll]

Lisa Marie - your experience is what hurt me the most - my oldest friend seemed to "one up me"
or say I have that.  Trust me she doesn't. That was worse foe me than any other ignorance.

I've been treated appallingly... Like all you guys over the past 10 years (even 4 yrs ago there wasn't much info or support on the internet).

I guess the healthier people are blessed they do not understand.
I guess regular people do not shock me as much as the Dr. House type Specialists I have encountered. 

I shared with an RN who was teaching me Biofeedback to deal with Peripheral Neuropathy (in remission now)
about the 2 or 3 different doctors horrendous behaviors and she was shocked. 
I've heard RNs aren't always treated with respect by the Doctors they work along side with...
so I was surprised she was shocked.
Also, I had to stop watching some Medical Fiction shows because it was hitting too close to home.

Hey I once told my friends Mother, after she told me I looked great
I said "Thanks..." and mumbled "I feel like the painting of "The Scream" though."
as she was turning around to walk away - she "startled" a bit as she heard me with a pause - then continued walking.

We've lived so long with pain and discomfort our tolerance goes up and we get on with it... at a level that all the "norms"
cannot fathom.

sometimes it is hard for me to listen to my friends whine about a sore throat, PMS or the flu...   

[Joe S.]

The one ups-man-ship reminds me of childhood.

When I was working at Qwest, I got a call from another tech. I had just been in to see the dentist for a root canal and lots of drill and fill. She had been in that day also for some similar work. Fibromyalgia, and Migraines were also in the conversation. You know how it went "me too" plus "this". Since I had gone through the same experience I made the remark "you bring the wine and I will bring the cheese and if we find someone to bring the bread we can have lunch". This proved to be too much for her so she looked up my supervisor and called her to file an EEO complaint. My supervisor confirmed everything I said and added the rest of what was going on with me at the time. She wrote a nice apology email and never complained like that to me again. She would ask what I was doing when I had this or that happen from then on.

Often we get caught up in these discussions through the scripts we learned as children.

[mshistory]

Wow, I never thought people would associate autoimmune diseases with AIDS! I don't usually talk about it anyway unless it's to family or close friends, but when I do, I usually just tell people I have a connective tissue disease that's similar to Lupus and leave it at that. Most people have heard of Lupus, so I don't have to explain anything else.

[gold55]

Boy, you guys all have some great comebacks and your insight of the general public's knowledge of chronic illness is something I have to get used to!  I'm still pretty new at a lot of this stuff yet I've absorbed so much from reading posts on this site.  When it comes to reality we want to think all people have good intentions but I agree.....these days so many are so obsessed with themselves.
Elaine, I would have never thought of the AIDS association with the word immune....I think you nailed it!!  My most hurtful encounter was with an Ophthalmologist who I worked with for 14 years ...  keep in mind that most all Ophthalmologists think Sjogrens is only sicca....they don't consider the systemic side of it at all!  When I mentioned the drug of choice to treat my newfound illness was Plaquenil, I received a big "ewwwwww" from him!!!!!!  I was so shocked at this immature response I ended our phone call and have not talked to him since.  He's off my Christmas list and I haven't returned any of his calls.  It's sad but when his wife attempted suicide I sent a card and asked if I could be of help yet when I mentioned my new diagnosis all he could talk about was me helping him start up a new glaucoma program.  That was the final straw that made me realize he never really cared and had been using me all these years as a workhorse!!  duhhhhh!  I'm too old for this.....  I don't need to continue to be polite because someone is highly respected in the community..... I don't need his reference for a new job....heck, I'm free to decide who I keep on my friend list these days.  If anything this disease is teaching me about people and stress that I need to avoid!!
Thanks again for all your enlightening comments.  I will keep reading posts and absorbing like a sponge.  Maybe one day I'll be able to assist others with my knowledge and experience and empathy of their condition.  Have a super weekend!    

[Mrs.Crary]

Easiest way I explain it is just to tell folks that my immune system went crazy and decided to eat me alive. That tends to put them at ease enough to explain the nitty gritty as well as conveying the seriousness of the illness. Just have to remember to be lighthearted when saying it

[soycoffee]

How about "Primary Exhaustion"?

Soycoffee

PS. I don't think of fatigue as suddenly falling asleep. From a sleep medicine POV that's either hypersomnia or narcolepsy, not Sjögren's or Fibromyalgia.

Telling people you have "hypersomnia" would probably get the incurious to shut up, and the concerned to ask more.

Good luck,
Soycoffee again

PPS  Probably putting the adjective "Primary" in front of anything would make it sound more important, as in Primary vs. Secondary Sjögren's.

Tired of signing my name,
Soycoffee

[DragonflyC]

Paperdoll, I hadn't heard of anyone in the news having Sjogren's other than Venus Williams. Thank you for sharing!

For anyone interested, the Irish soccer (football) player is Stephen McPhail, and there's an article about his most recent flare here: http://news.bbc.co.uk/sport2/hi/football/16091801.stm

Once again, the news makes SJS sound like a cold from which one can recover (and it also underplays the lymphoma/SJS connection), but at least the name is getting out there!

--C.

[stephL]

Thanks for the BBC link DragonflyC! This was very helpful to me. I don't think the article was too bad about describing it as a serious illness. I've seen a lot worse.

[jazzlover]

Man... what are you telling them???

-
If they think it's AIDS, they are dumber than a rock! I've never had a negative reaction, just questions on what it is.

[jazzlover]

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

--

she's out playing tennis and we're not as ill as she is?? huh?

[slccom]

The lovely thing about life is that someday they, too, will be hit by something nasty. In some cases, I vote for the sooner, the better

That said, maybe I hang around a higher class of people. I've never had a negative reaction, and have taken the time to talk to some people who were showing some symptoms of Sjogren's and encouraging them to get some help.

[Patze]

Yep Jazzlover, this was the same person that told me that Hashimoto's was nothing and just take a pill and it will be just fine.  This person has had some health problems over the years as well (I listened to all the problems dealing with them and you would think that the person would "get" it), but it seems that if its me, the person just doesn't think that I am sick (you know the "I know someone that has that and all that person just takes is a pill and is just fine" routine ). 

I'm really befumbled about this person as I thought that the person was a friend...every since I started to talk about this mess, the reality is this person is not much of one to be sure.  Oye vey and nope, don't talk to the person about my health any longer; the "double standard" has become tiresome.


Patze

[slccom]

Having been born with a hearing loss, which affects every single moment of my waking life and makes me very vulnerable asleep, I often have to tell people about the HL. I do have very clear speech. Weirdly, especially when I was younger, people would say, "No you don't, I mumble." I don't know if they were around my age and didn't want to think that a peer could have a hearing loss, or what.  Now, they usually ask about someone in their life with hearing loss for whom they want some advice, which generally means, "How the heck can I get ____ to get hearing aids!!!!!"

Now my usual approach, when possible, is to start laughing when I mishear something (and know that I misheard) that comes out funny, I share what I heard with them. "Fortunately, usually people didn't actually say what I heard!"

I find the spoons theory very useful, and with those who know about it, I just say that I'm short on spoons now and can't. Or if they want to go somewhere cold I just tell them that I have Raynaud's and my fingers and toes will freeze. Or it is too cold to go outside, and if I try I'll cough myself into unconsciousness. I just go by symptom for the conditions.

But as I said, I think I hang around a higher class of people -- lots of people with disabilities, musicians, Masons, etc.