I hate saying "moisture-producing glands."

[A66eyroad]

I just can't stand telling people that Sjogren's attacks moisture-producing glands. It just sounds so inconsequential, so trivial. No wonder we're thought of as complaining about nothing.

Can't we say that Sjogren's destroys (now there's a strong word!) mucous membranes throughout the body, from the mouth and eyes to the lungs, bladder and stomach? That sounds more crucial to me.

What do you others tell people about Sjogren's?

[KellyG999]

I hear ya on that. I don't tell many people very much. When I came back from FMLA after 10 weeks off, everyone wanted to know. I said I have a chronic illness, and needed time off for treatment. I am feeling much better, thanks for asking. People hate that!! Some asked outright, and I said I'd rather not discuss a private health matter.

As for my family, my mom refuses to believe I have Sjogrens. She is still hoping it's something more temporary in nature...

I tell friends I have a rare autoimmune disease that attacks my mouth, throat and eyes and causes allover pain and fatigue. Done!!

Take care,

KellyG

[stephL]

How about something like: 'It disrupts the fluid distribution system throughout the body, causing dehydration in various tissues and organs.' I suppose that wouldn't be considered an accurate description in medical terms, but it might help ppl to better understand what's going on.

[DragonflyC]

I rely on "it's a lot like lupus" most of the time. When someone seems interested in hearing more, I'll say, "My body is attacking my exocrine system--pretty much anything with moisture, like my eyes, mouth, lungs, joints, is affected, and I have pretty serious fatigue" (hearing "lungs"--which were actually my very first AI disease problem--seems to carry weight with people).

Lately, I've also found that referencing Venus Williams helps, too. She's our first big name Sjogren's sufferer, and most people have heard that her career was sidetracked by an AI disease even if they can't remember which one. For some reason, people seem to take a disease they've heard of more seriously than a disease they haven't (I had always thought the rare ones were the worst, but I've found that most people don't think that way).

My rheum describes Sjogren's this way: "It's like having the flu all the time. You get used to feeling run down, but the many symptoms are quite wearing."

[lolo1979]

I never know what to say either. Usually I don't tell people what i have. In fact, almost no one knows. I even hate telling people I have sjogrens because then I have to tell them what it is, first off. Then when they know, I worry that they'll hone in on my eyes and mouth and be looking for evidence of it, so to speak. I am self-conscious about it enough as it is, and the last thing I want is someone concentrating on my "flaws" such as they were.

If I ever HAVE to tell people, I would rather describe it as a lupus like disease than say it's sjogrens. I know this was a discussion going on in another thread.  For those that I have told, I tell them it's an autoimmune disease that can basically attack anything in my body.  All true.

[mshistory]

I usually just say "connective tissue disease" because my symptoms are more lupus like too, but it does seem as if SjS isn't taken as seriously. I'm having a CT scan of my lungs in a couple of days because of pulmonary issues...that seems pretty serious to me!

[Madison Granny]

When people ask what I have I tell them SJS.  They then get a puzzled look on their face, so I ask them if they know what lupus is.  Most say yes they do, so I then tell them it's like that except it attacks my tear glands as well as other moisture producing glands instead of my organs.  It seems to work for them.

[Pisces24]

Don't know what you would call it but my glands are more like where all the gunk piles up at like a clogged filter.  Extra Baggage? LOL

[Patze]

Same here Madison Granny....when I told some of them that I have SJS, they get the deer in the head lights kind of look.  I too compared it to lupus (a cousin) and some of them got it while the others just shrugged and walked away.  


Patze

[Skylar]

I guess I'm in the minority - I don't discuss it with others - just my immediate family. Years ago I was originally diagnosed with MS and I did some research and found people who lost their jobs strictly because of the MS dx and not because it was interfering with their ability to work. If someone asks me how I am or why I am sick etc. I just say I'm feeling better and switch the subject.

[DragonflyC]

Skylar, you are definitely right that people need to be cautious about who they tell, especially at work.

But I do think that we need to talk about it when we can, because the higher Sjogren's Syndrome's profile is--the more attention it gets--the more doctors will be interested in researching it, the more reporters will cover it, the more people might say, "Hey, that sounds like me!" and get diagnosed, the more advocates we will all have, the more funds we can raise. . .

My boss doesn't know (and I will keep it that way as long as I can and then downplay it if I ever have to discuss it with her--she and I don't work in the same building, though, so it may never come up), but many of my colleagues know, as do most of my friends and family. I also reference Sjogren's regularly (but not frequently--don't want to bore people!) on Facebook.

A few months ago, my rheum told me that a reporter had interviewed him for an article about Sjogren's and wanted to talk to a patient. My rheum asked if I'd mind if he gave the reporter my contact information, and I have to admit that I wrestled with it quite a bit. Eventually, I did agree to participate in the interview, and I'm glad I did. With so much misinformation out there and so many people speaking for us who just don't really know what it's like, I wanted to stand up and share the realities of Sjogren's as I have experienced them and as I've seen others here describe their experience. The article wasn't perfect, but I was proud to have played a part in spreading the word.

[Skylar]

DragonflyC, you do make excellent points about spreading the word about Sjogrens and I appreciate that you are brave enough to be interviewed. I guess I should rethink my position.

[irish]

I just tell it like it is. I tell them that I have an autoimmune disease called Sjogrens that is a second cousin to lupus that is trying to literally kill me off. It does this by destroying all the secreting glands in the body which include the ones in mouth, nose, throat, liver, pancreas, colon, stomach, etc. 

I tell that it is often looked at as a very minor disease but the docs are now finding that it can also cause permanent kidney damage, loss of hearing and vision and is a disease that needs to be taken seriously and treated.

I figure they asked and I am going to give them a lesson in Sjogrens cause one doesn't know when any member of one's family could get it. They need to know that it is important to pay attention to these symptoms and that it is not in their head. I tell them that also.

I have a couple of friends who don't "give in" to illness and I have even told them that I am going to take the time to explain something to you that is very important. I explained that people were treated like mental cases over the years and the medical community is now getting their information up and running.

I also tell them that if anyone of their family is having lots of weird issues and not getting any serious doctor input they need to find a doctor who will listen because the autoimmune issues are really becoming more common. Autoimmune diseases seem to be increasing according to the specialists because of the industrial revolution and all the chemicals in the air and food we eat.

I figure that I can't do much at my age anymore, but I am going to make sure that I get some "patient teaching" in to wise up the general population Irish

[Joe S.]

Like Irish, I usually say it is like lupus but it attacks your glands.

[smallfry]

I agree with Irish how can we get our plight across if we don't get the word out, and let people know just what is happening to our bodies, the more people know exactly what is happening the more chance there is for more research, and hopefully in the not to distant future a cure.

I was at the neurologist just the other day and he said to me "yes you have an autoimmune disease that hasn't killed you" I felt like saying I would really like to see you live with this.

With people like that we have a long way to go.

Cheryl