If one more person tells me...

[Patze]

Ah Jellyb, I actually had to sit on my hands not to type what instantly came to my mind....  My gosh, what in the world does this lady think you actually have?  Never mind, guess she really wasn't checking the quality of residue of her outboard motor (her mouth).  Sad to say, it's not that uncommon.

Once had a doctor tell me that I should be on a particular med for my thyroid problem, ooookkkkkkaaaaaaaayyyyyyyyy.  When I reminded him that I'm sensitive to that drug (got daily headaches when I used it), he told me that he didn't care and that all of his patients used it (yeah, put up with that crap far too long; his staff was even worse).


Patze

[mshistory]

I'm underweight and having a hard time putting weight back on. My father keeps telling me I should start drinking sugary soda...which makes me want to scream every time. I've tried explaining to him that thanks to my SS, I get cavities easily enough as it is, I have areas with virtually no enamel left and he wants me to drink soda every day!? 

[sewandsew]

This was good reading.  Or maybe it is just good to know we are all going through it.

If someone asks me how I am my answer is "fine."  They really don't want to hear otherwise. 

I have a friend who calls and asks how I am only so she can go into her half-hour medical problem list.  This happens weekly and her medical problems are different every week.  One week her BP was so low the doctor walked her across the hall to the cardiologist.  The next week her BP was so high the doctor wanted her to lose 10 pounds.  And, she is always on her last breathe.  I'd like to tell her to "get a life."

[COLLYGIRL]

I had one person tell me that in order for me to get better it was mind over matter.  That if I just thought positive thoughts and didn't think about my symptoms, I would feel better. Interestingly this person now has alot of health problems.  I feel guilty because sometimes I am not very sympathetic to her.  Also when someone asks how I am doing, I just say fine because other than my family and some friends most people don't care.

[stephL]

"Oh, you're still sick?"  I want to ask them to look up the meaning of "Chronic Illness".  It's not going away today or tomorrow or next year, ok? 
Melinda

Meld, I've always been puzzled about people who react with surprise when they see you're not making any big improvements over time. Then I read an explanation online somewhere. Even though people know about progressive chronic incurable diseases like MS, they believe that there is a 'cure' or effective treatment for most diseases. Hey, it's modern times now, right? Some people will make a negative judgement about you, thinking that you are not following doctor's treatment orders so it's your own fault if you're not getting better. It's "Can't you just take something?"

This was a real eye opener for me. My doc  was surprised to hear that a good number of people are critical of sick people, but when I explained this 'theory' to her, she understood it.

[ritabroden]

Are the people telling you these things responding to your questions from what you have posted on this site? Or, are they friends and loved ones who don't understand what you're experiencing? The reason I ask is a 2 fold thing. If they are telling you from this site it is because they are trying to help you by sharing information and insight that has helped them. If they are friends and loved ones, they TOO are trying to help and comfort you in the only way they know how! Unless a person has Sjogren's they cannot possibly understand what it does to our bodies. Even those of us who have it have it at different levels. So, everyone tries to help and most often it comes in the form of advice! Take the advice with as much grace as you can muster! I DO believe they mean well!

[sunnybunny]

Rita,
no its not ever anyone here giving me goofy advice, we're all in the same boat.
and honestly sometimes i thing with some specific suggestions, I would take it more
to heart from someone here over the same suggestion from anyone else.
thats probably terrible to admit, but i dont come here to lie.
it's just the feeling of how no one understands what they're proposing unless they
really walk in our shoes. More than anything, I guess its most irritating for me that
one particular relative(far enough away  ) seems to have ALOT of opinions, and most of
them are based on the premise of me not trying hard enough, and me not trying any
of That persons advice,and me not living my life like them.
I dont think you'll ever find anyone here arguing between eachother.atleast i've never seen it.
Everyone takes care to be kind and helpful.
we get enough trouble out there in the world as it is.

[stephL]

Are the people telling you these things responding to your questions from what you have posted on this site? Or, are they friends and loved ones who don't understand what you're experiencing? The reason I ask is a 2 fold thing. If they are telling you from this site it is because they are trying to help you by sharing information and insight that has helped them. If they are friends and loved ones, they TOO are trying to help and comfort you in the only way they know how! Unless a person has Sjogren's they cannot possibly understand what it does to our bodies. Even those of us who have it have it at different levels. So, everyone tries to help and most often it comes in the form of advice! Take the advice with as much grace as you can muster! I DO believe they mean well!

One thoughtless comment said is passing is not THAT big of a deal to me. I don't want to see myself as a victim. lol I think most of us try to keep a good sense of humor, try not to to be thin-skinned and avoid taking offense when none is intended. These comments are annoying and we ease the stress of it by discussing it here and having a few laughs.

On the other hand, some comments are quite serious and meant to damage the relationship we share with that person. Our illness can cause unmanageable anxiety for people with poor coping skills, because it's a reminder that they too, could possibly  get an incurable disease one day. They push us away by saying hurtful things to relieve their own anxiety and they really don't want us around anymore.

In the case of some doctors and healthcare professionals, (not all!), they have insecurities that are stirred when confronted with a disease they know little about and find themselves at a loss as to how to help us. So they push away their own fear of failure by saying things that discourage us from coming back.

So yep, we folks who are ill have to face a certain amount of rejection and it can be devastating at times.  As wheel-chair bound psychologist Dr. Dan Gottlieb says about  the cutting remarks that disabled people encounter, "We are their worst nightmare."

I think illness shows you who your true friends are, which can actually be a good thing in the long run.

[LizPetillo]

the physical therapist said " oh, thats the latest thing now isnt it". I was not sure how to respond to that, so I didnt.

I can't post what my response would have been .... 

My PCP gave me a rant one day about how it's all in the mind .. told me a story about some people on some Island in the south pacific or something that were all scared to death of a stick that would supposedly kill them if they touched it.  They worked themselves up so much that when they touched it they actually died.

This was her response to me saying that I have a lot of bad reactions to drugs.  In other words .. she wasn't buying it and thought it was all in my mind.  There is PROOF that people with sjogrens are MUCH more drug sensitive then the general population ... and yet she went on and on with 'the stick' story.

[LizPetillo]

My father keeps telling me I should start drinking sugary soda...

Yep ... cavities AND EVEN WORSE ... it's a food for thrush.  We don't have the right balance in our mouths to stop thrush.  We have to avoid sugars or we can get it easily.  Oh .. and sugars are an inflammatory so you'd end up a hurting mess.

[mshistory]

My father keeps telling me I should start drinking sugary soda...

Yep ... cavities AND EVEN WORSE ... it's a food for thrush.  We don't have the right balance in our mouths to stop thrush.  We have to avoid sugars or we can get it easily.  Oh .. and sugars are an inflammatory so you'd end up a hurting mess.

Thank you for that info!! I'm going to tell him that - or show him this message and maybe he'll stop bugging me about it!

[Meld256]

StephL,

You make some very insightful points. (as usual) 
I think most people feel there MUST be a cure for most everything; with all the medical advancements today it's understandable.  And I also believe it frightens others (outside of our Sjoggie world) to think that something such as this could happen to them, too.

ritabroden,
First of all, if I've not welcomed you here, Welcome!  I think you'll find the forum full of good info. and friendly people. 

To your question, we're all referring to people who don't understand our "challenges" whether they be family, friends, doctors, etc.  Everyone here is careful to either kindly suggest or just give their opinion, but we are never pushy, since we certainly can get enough of that from others in our lives!
Please keep posting. We look forward to hearing more from you.
Take care, all.
Melinda

[Gonzo]

I have a friend who suggested that I'm having a burn out. I told her that the internist had done a lot of tests and that he said it's definitly not a burn out but that he is 100% sure that it is Sjogren and I have to come in regulary to his office becuase he is afraid that there will be also another disease, like rheuma or something else. But still she thinks I'm having a burn out. She has no medical training, but she herself had a burn out a couple of years ago which she was having trouble to accept, and now she thinks that I'm too in denial... pfff... makes me hopeless, or waht is the right word in english. I didn't expected it from here that she won't accept that I have a disease that won't go away and that I can't do anymore what I used to do...

All the best!
Gonzo 

[Jorja]

Your post brought a smile to my face.  I can't count the times I've heard "but you look so good".  I just quote an old preacher friends remark about women wearing makeup.  He said "Even an old barn door looks better with a fresh coat of paint."  It usually stops more trite remarks.