Well meaning friends...

[DanzGrl]

Do you all have well meaning friends that kind of discourage you in regards to your disease and treatment?  How do you deal with it?

[Scottietottie]

Hi 

I have several dear friends but in all honesty they don't 'get' Sjogren's at all. Cancer, MS, Diabetes - they 'get'. They're middle aged like me and see 'aches and pains' as part of ageing and of menopause. Pretty well all my friends reckon I'm better now because I've had a partial knee replacement, which has been a great success and so I don't use a stick/crutches any more, so visibly I'm fine. Dry eyes and mouth get fobbed off as weather or room temperature related and explanations end up sounding like whinging.

Basically I don't deal with it. I've told them at work that hospital appointments will keep cropping up. Otherwise I come in here and talk to people who I know will understand.

Take care - Scottie 

[Billydude]

I often have people say.  "Oh well,  we're all getting older and have aches and pains".    THEY DON"T GET IT!    They also don't get it because I look physically big and strong.
Steve

[genko_b]

I get both sides of the coin. There are folks who do not understand that Sjogren's can be pretty disabling. There are also those who perceive me as completely disabled and near death, and are always calling to check on me and see if I'm still here. One of the things I've figured out over time is that people's attitudes toward illness are based on how they handle their own health, and are not a reflection of the actual medical condition of the person they are speaking to.

Then there are some folks who accept that I have a medical condition, don't bug me about it, and take me at my word when I say "can't do it right now." In other words, they see me as a person and not a patient. Which is how I like to see myself.

This is really the best place to come when we need to vent to people who understand our particular situation.

Genko

[Patze]

Hi all,

I agree with you, a lot of people look at me and just see the fluff, they're not looking at how slowly I get out of my chair, or walk after getting out of the chair.  They don't see my blurry vision when my eyes are giving me grief, they don't hear the silent ouches as the bottom of my feet feel like I'm stepping on glass.  

I often hear that "your just getting older" a lot; I've told a few people that I know I'm getting older, now tell me something I don't.  Talk about the looks I got.  Hey, one day at a time.

Patze

[irish]

It is hardly worth wasting ones breath trying to explain to friends or enemies about how you feel. No one can see it and they can't feel it. Sometimes I am thrilled to look crappy cause I figure maybe someone will notice!!!!1

In fact----last week in the grocery store a old nurse coo-worker saw me and said "you look better that you have in a long time" and I could have kissed her. Of course, she is a nurse so she is more apt to notice how I look. But still---it was nice while it lasted. Irish

[ProudAuntieNWash]

How sweet of the nurse to say you looked great.

Wish I was getting that kind of compliment all I get lately is gee you are losing your hair. And what is more embarrassing is when you can't get things straight. That brain fog sure messes a person up. I can't get times or dates straight. When I say left I mean right LOL.

I have a question, does anyone else have more then normal migraine type headaches when they are in a flare? I seem to.

Denise

[pudmott]

Because i'm 35 and i have anxiety, all my stuff is put down to the anxiety. I get the dear dear's like im a bit of a hypochondriac. My partner doesn't understand that i need to rest and take it easy sometimes and gets a bit imaptient with me. yesterday she told me she doesn't want to retire and then have to look after me. In her defense tho she was under the influence of morphine and passing a kidney stone.
Its correct about other people's percepion of how they handle pain and illness effects how they see others. My neighbour has a massive pain threshold and keeps going when its really really unwise to do so. Because i regularly check out things that are happening and rest when i have pain and fatigue. i get ridiculed. she tells me to suck it up.

People dont understand. Coming here is a great help

Pud

[Patze]

Gosh, that is one phrase I wish people would quit using, "just suck it up" is so demeaning when you're trying your best.

Patze

[ProudAuntieNWash]

I agree. People havn't a clue on how much it takes just to do simple things.

Today I am doing some better. Maybe my flare is ending. I sure hope so.

Denise

[genko_b]

Glad to hear you are doing better. And yes, I get those headaches in a flare too.

And "suck it up" is something no one should ever say unless they are saying it about themselves. Or any other judgmental phrases like that.

Genko

[Rania]

Oh yes, I've had my share of "well meanings" from many people. It is impossible to explain when you most of the time don't look sick. So I have kind of given up on the explanation thing. I even let people believe it is "just" my back bothering me. I use crutches or a wheelchair, and they seem to think it is just the back. It is ok with me. I have no urge to explain anyways. The times I've replied "do you really wanna know how I'm doing", and I explain, they cannot handle it well. Sometimes I even get very suspiscious looks. "You are so young. Are you sure you're that sick? It sounds serious!" "H**k yes, Sjogrens and Lupus plus plus IS serius! Why don't you listen to me when you ask about my life? Do you really wanna know because you care about me, or are you seeking some goodies to chit chat and gossip about?"

Some people just..........they are so in lack of empathy that I really wonder how they feel about themselves. I mean...they'e nice people usually, but I feel that people sometimes are very shallow. Sad to say, but I like it better when I'm around other people who is sick one way or the other. Don't get me wrong, of course I want people to be healthy. But the fact is that a lot of people have bad health in a way, and I prefer to be wit them usually.

[salsen]

Most people do get there is something slower about me.  I have had both knees replaced and my balance is odd due to neuropathy.  I am slower going up and down steps and inclines.  I tend to weave when either out in the open or too narrow of a space.  Without a doubt the hustle in my bustle is no longer there.  My family all know I have issues and make allowances and I give them info only as I see fit or if they ask a direct questions.

I find most others just tend to act like they don't see the difference in the way I walk.  Think they maybe afraid I will actually tell them what is wrong LOL.  That is fine with me as otherwise they don't have a clue what SJS is and go blank when I try to expain.

[lynnmarie219]

I agree...I try not to explain too much to others because its just not worth it and I usually end up getting my feelings hurt!

So instead I can come here and not have to explain everything and people will still GET IT!

Even people who try to understand (bless their hearts) really don't know what I'm feeling so I know I hide a lot of my aches and pains.....some people notice it and others don't or at least don't act like they do!

Thats just the way it is I guess.....Ive learned to accept it! 

[Solmom]

Pud,
I couldnt agree with you more!! I'm 34 and I get the same thing as you. I even had a "friend" say "Arent you going a bit over board with taking so much medcine, just for being tired?" I was speechless (Considering I told her ALL the symtoms!)

I'm so glad Im here, with people who understand.