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Sjögren's Syndrome Message Board
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Old 06-20-2012, 07:54 PM   #1
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What do you tell people?

Do you tell people (friends, co-workers) that you have Sjogren's, or do you suffer in silence? I'm having a hard time with it and sometimes feel like telling people, but I worry they will think it's weird. It's not easy to answer a question like what is Sjogren's Syndrome. It affects me in so many ways. Is it too much information to be telling a co-worker? There are times when I have trouble talking and have coughing attacks and water hardly helps. It's embarrassing. I feel like telling people why this is happening to me, why it's hard for me to talk without taking sips of water between words. Just curious how other people handle it.

 
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Old 06-21-2012, 11:30 AM   #2
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Re: What do you tell people?

Sjogrens is nothing to be ashamed of. I was diagnosed in 1997 and it has progressed over the years. I have nearly choked to death, have had terrible fatigue, muscle and joint pain as well as being susceptible to every thing my grand children pick up at school. I cannot carry on a lengthy conversation with out drinking.........
I tell anyone with whom I have a working or friendship relationship and it has never caused a problem because they know what I have.
Just tell people and they won't think you are weird, after all it's not your fault.
I tell them that I have an autoimmune condition that affects my mouth and eyes as well as other parts of my body. Simple as that.
Good luck to you.

 
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Old 06-21-2012, 11:49 AM   #3
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Re: What do you tell people?

I don't have that, but I do have other ongoing health issues. My rule for disclosing is, don't make it a big deal. if it's relevant, I talk about it in a matter of fact way.

For example: "Man, I'm sorry I'm always coughing and needing to drink water. My mouth just doesn't make enough saliva, it's something called Sjogren's."

 
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Old 06-21-2012, 12:17 PM   #4
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Re: What do you tell people?

I don't make a big deal out of it either. Not really co-workers' business unless I'm talking and do the coughing thing. Then I just take the sip of liquid, say excuse me, and get on with it. I don't explain Why I sneeze every time I sneeze, so same goes for cough. I also think it depends on your corporate culture. If people think you are sick, (or that you are whining about being sick, or flat out don't believe that you are) it can cost you a raise or a promotion. As to friends, sure, if you like. Tell em once and done. I've noticed that anything more than that can be uncomfortable for the friend, sometimes.

 
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Old 07-04-2012, 08:26 PM   #5
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Re: What do you tell people?

i went for some test in the hospital related to my sjogren's syndrome and the RN's that were putting in my IV and taking "care of me", had never heard of sjogren's and it was a Hospital. Sometimes telling people works and sometimes it just gets frustrating. Does anyone else feel that way. i mean its one thing to explain it to friends and family, but I don't feel like I have to explain it to an RN in a hospital, for goodness sakes.

 
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Old 07-05-2012, 08:43 AM   #6
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Re: What do you tell people?

LOL, I have what used to be called CREST but is now referred to as limited systemic scleroderma, in addition to Sjogren's, but I do not yet have the sclerodactyly (hard fingers). Two rare diseases and sometimes you do have to explain things. I had to go in for an MRI not too long ago and had to explain to the nurses, one of whom was the department head, why the couldn't get the IV in, LOL. It took 'em two hours and finding someone who had actually dealt with a scleroderma patient. You can't expect everyone to know all about these things, even nurses, because they just haven't come across it and may only see it rarely again. I know that every time I'm in a medical setting with people who aren't familiar with these diseases, they all come running to see

 
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Old 07-06-2012, 08:13 AM   #7
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Re: What do you tell people?

I try to be just "matter of fact" about it. I tell people that I have SS. When they ask what it is is I say that it is an auto immune illness that is a cousin (or sister) disease to Lupus. Most people know what Lupus is and no further explanation is necessary. I haven't had it cause any issues with my job at all. In fact everyone is very supportive and have put things in place so that if I flare it will have as little impact on my job as possible and at the same time allow me the time I need to get well. In my personal life it has really helped to "educate" my friends and family. They are supportive as well and understand when I have to cancel plans or whatever.

 
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Old 07-06-2012, 09:12 AM   #8
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Re: What do you tell people?

Hello Knot,
I agree that being forthright with something like we have is important. I too have had very good support from friends, family and coworkers. I have found that most of the people I work with have some sort of health issue and we just help each other out.
I am in a bit of a remission due to taking Plaquenil, mainly with fatigue. I am planning to walk 100km of the Camino Santiago next May and I wouldn't even be able to consider it if not for that drug. Take care.

 
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