Question for everyone...what would you call Sjogren's? A disease? A disorder? A condition?
Just trying to figure out what term I should use if anyone asks me about it or I have to tell anyone about it. I don't want to downplay it, but at the same time, I don't want to exaggerate either.
What do you think?
Hi Amber,
I believe that Sjogren's is referred to as a syndrome (I've heard it call by some other comments, but I'll keep it clean! ;))! And I call it a pain in the you know what!!!! ::)
Take care -
Patze
I think it is a life sentence with no chance of parole.
I am still looking for a possibility of parole.
I tell people it is a lupus like disease. Most say, "Oh yes, I heard of that." End of conversation.
If they want something more technical, Sjogren's is an autoimmune disease, of which sicca is a symptom, in addition to other typical rheumatic symptoms, such as arthropathy, neuropathy, etc.
Sjogren's Syndrome is an autoimmune disease, so saying "disease" is not exaggerating.
Like Inga, I usually say, "It's like lupus." People are more understanding when it's something they've heard of, though I can't figure out why that is. Before I got sick, hearing that someone had something weird or rare always seemed MORE serious to me. It's been shocking to see how many people just shrug it off as no big deal until I compare it to lupus (it's an apt comparison; my rheum is never sure if I have Primary SJS or mild lupus with a SJS overlap--it's really six of one as far as I'm concerned since the treatment's the same and the symptoms overlap so much).
I believe technically its called a syndrome as Patze said which means its a group of symptoms that occur together.
I also tell people it a cousin to Lupus and/or MS....they understand that much better. Another simple way to explain it to others is to tell them that a "normal" body fights against things that shouldn't be there such as things that cause infections or other intruders....our bodies fight against our own bodies often attacking moisture producing organs first (which can be most anything when you think of it...not just our eyes and mouth). It pretty much simplifies it...but it still hits the main point!
I use fibromyalgis-like, rheumatoid arthritis, or lupus. I don't usually use all of these at once. But will refer to one or two depending on whom I'm talking to.
It seems the more I say, the less they listen. I have sent "sites" to a couple of relatives to look at.
Basically, I think most people have their own problems, or their kid's health problems, or their parents health problems to worry about and give others about 4 seconds of pretend sympathy. They simply don't have the energy to worry about us. I don't think it's being mean, but getting older, we all know this. We usually haven't seen the worst yet. In the meantime, enjoy what you can.
A cancer diagnosis six months after Sjogrens diagnosis was a big slap in the face. You don't know if you're coming or going. There are others on here, namely EPSON having to deal with the cancer thing too. I finally have started to not G- A- S what other people think. If they think I'm limping for the fun of it, well that's ok with me. I'd rather have to describe this than MS. We're doing good everyone, even if we're in a bad slump! ;D
Lucy, I couldn't have said it anymore eloquently. ;D
Hi :)
I think it depends how ill it makes you because many are more or less able to get on with their lives (like me) and others are severely incapacitated. To me it's a condition or a syndrome but to others it's more like a disease.
My son has Crohn's Disease. There is no doubt in my mind that when he has 'episodes' he is iller than I have ever been.
I felt very sorry for myself when I first got dxd. It was a double of Hashimoto's and lupus/sjogren's within 4 months of each other. Then my two youngest children (young adults at the time) came down with glandular fever (mono) withing 9 months of each other and with both of them it was life threatening - but in different ways. We actually thought it was going to permanently disable my son and it was very scary. That's when I pulled myself together and realised that I was uncomfortable but not ill.
Take care - Scottie :)
It's like a really bad kid that hurts their younger siblings when the parents are not looking but always gives that look of innocence leaving the sibling to cry foul only to have the parent not believe them because they trust what they see in that bad seed.
Sjogrens may look innocent, but it does alot of hurt, only no one can see on the outside just how bad it is, they think dry eyes and dry mouth, no matter how much we cry foul!
It's been labeled both by the medical field, I think that's one of the things they are still trying to work out.
Personally I think a lot has to do with how it's affecting you personally what you may choose to call it, if you have a mild case then you might thing syndrome, but if it's kicking your butt, then it's the worst case scenario, it's a disease!! I don't think either would be wrong.
I would call it a distructive parasite that slowly eats away at your internal organs while your outer shell looks fine, death by a million cuts :-[
Its a curse! I also describe it as Lupus like. Again, today while explaining it to someone at a store they said they were surprised because I look so healthy. If they had seen me drag myself home in a total head sweat and plop down in my chair unable to move they might have thought differently.
Billydude,
LOL! I know that's right!
Monday while helping with a community event for teen girls I had the nevers to be up on stage practicing with them demostrating how they should walk with an upbeat gait, well BEFORE that practice was over, hour 1/2 my feet felt like they were splitting in half. I as so embrassed cause my feet couldn't stand to be on the floor! I limped all the way to my car, if I was home I knew it would be one of those times I would have crawled. I wanted to cry cause I had to drop off one of the girls instead of coming straight home. By the time I got home my feet and legs were swollen!
SJOGRENS IS ONE HOT EMBRASSING MESS AFTER ANOTHER! ::) ::) ::)
I would call it a PAIN in the place where you sit..
Eye,
Yeah, that too! >:( >:( ;) ;D ;D ;D
chair?
A curse,, yesterday while getting infused,, I was with some people with MS and all of us were talking about how people treat us,, all of us agreed that one of the worst ones was that,, But you dont look sick,, today I feel like I have a day left on this earth,, never felt this bad
I have a few choice words for it that I won't repeat.
Bernice I loved your explaination!! It's like a really bad kid that hurts their younger siblings when the parents are not looking but always gives that look of innocence leaving the sibling to cry foul only to have the parent not believe them because they trust what they see in that bad seed
hugs harlin
It's a killer,
Social Killer,Passion Kliier, Sleep killer, Beauty killer,Personality Killer,Et'c Et'c
And someone once said here that SS doesent kill you!!
HA HA Dolly