So many people have never heard of Sjogrens Syndrome.
There are times when I just don’t want to have a long conversation and explain.
Is it just so much easier to say " I have Lupus".
If it works for you, then fine. There's something about 'syndrome' that makes people back off I think; I have Eagles Syndrome and you should see the look on people's faces when you mention that! (No, I'm not going to start growing wings, it's a neck problem, and just named after the doctor who discovered it, like Sjogrens...) Like you say, you don't always want a long conversation. I guess more people have heard of Lupus?
Rather than saying a different disease, why not be a bit more encompassing and say that you have an autoimmune condition? You could even say that you have an autoimmune condition that causes a b and c.
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I know what you mean. Sjogren’s is hard to explain. So I tell people it is close to Lupus. They have a better understanding b/c everyone knows about Lupus.
I just say I have Fibro. Everyone seems to get that.
Just don’t have the energy to explain.
I don't say I have an autoimmune anymore because so many people confuse that with an immune deficiency disorder. I say I have a rare issue that is a cousin to Lupus if I don't feel like explaining. If they ask what I then I'll say Sjogren's. Funny, I always get that "oh. yeah" and the polite nod...meaning they have no idea. I'll just say "its rare" if anything then move on with whatever we were talking about.
Tell them that is a autoimmune disease just like lupus.its in the same family as any autoimmune disease.or tell them its a blood disorder disease.and has the same manisfitations as lupus.
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Gosh that's frustrating.hopefully since Venus Williams has it this will shine light through this disease. I really hope that one day this will become recongniable just like lupus.when you tell people they look at you like its nothing like something you made up.irks the sickness out of me.they can sure shed light on lupus and ruthmatoid art.this is just as debilitating.tell them to go online and research it.uggh! So believe me you I know excatley how you feel. Or tell them its where your white blood cells are attacked by your own body and destroys your mucous producing glands in your entire body.
I was going to say the I wouldn’t want to just say I had fibro because so many times when I was so sick and couldn’t figure out what it was the doctors blamed it on fibro. Finding out it was Sjogren’s and getting specific treatment was a major turn around in my life. While I do still have fibro I rarely mention it because in the past most people dismissed fibro as a “made up disease” doctors fall back on when they can’t figure out what is wrong. - Didn’t realize how old this post was… sorry…
I don’t think it’s wrong to say Lupus. I, too, said I have Sjogren’s. Then I said I have an autoimmune disease, and I got the AIDS mistake. Trying to convince those who thought/believed I said AIDS, not good for my general health.
How’s this? I have an autoimmune disorder called Sjogren’s. I just am so tired of trying to explain Sjogren’s to those who have doubts why I need to use a power wheelchair and a CPap machine at night, plus all the pills I take every day for my heart, my stomach, my lungs, my neurological pain, and now, my liver.
I do tire easily and that is NOT how I look. I look “too” healthy. Ahhh Sjogren’s. What a challenge.
This is definitely an ongoing issue. I rarely see the people not understanding autoimmune, but people definitely tend to downplay the specifics. I have psoriatic arthritis in addition to Sjogrens. How often do I hear people respond that they have arthritis in their knee /finger etc. Very frustrating, bc people don’t understand the systemic nature of these.
It is rather difficult to explain how Sjogren’s is not limited to the eyes and mouth. Those signs of Sjogren’s, dry eyes and dry mouth, was “dismissed”, not ignored, as ‘just’ side effects to the many prescriptions for the flu, bronchitis, various aches and pains. How my entire body responded when I was prescribed hydroxycholoquine finalized my diagnosis for Sjogren’s.
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