Awwww....your not sick!

[Corella]

Corella, I've copy-and-pasted your wonderful sentence into a word doc and I will practice this one in the mirror. Thanks!

No worries 

I am still in the 'is this really happening stage' which is comparable to being very defensive to anyone that challenges how I am feeling.  Whether or not that is a good thing I dont know but I am on zero tolerance, last week I had a comment saying 'You are always bloody sick you are' - to say I felt some verbal aggression is an understatement.

Today I saw my GP and said to him 'Are you sure there is no cure for this and I have it for life?'  He replied 'Sorry, I am afraid you certainly have it and there is no cure'

'But I dont want it' I said in a childish whining voice that did not belong to me.  He burst out laughing and I said to him 'that sounded very childish didnt it?' and he said yes it did.

So whilst I havent reached acceptance, I think I am at the 'fear' stage of 'god I dont want to lose my teeth and hair', I do however refuse to accept the fact that others think I am putting this illness on, hence the reason I am defensive.

I guess it is a time for finding out who is your real friend.

[stephL]

I guess the blessing in disguise about illness is that reality stares you in the face about certain people and priorities. While the realizations can be disconcerting, it's an opportunity to rearrange our lives in more meaningful ways. Time, energy, and relationships become precious and we are compelled to adapt and be aware of making better choices. Pay attention to how you feel after talking with someone. If you feel drained and deflated after talking to a particular person, avoid them. Spend time with the people who lift your spirits and leave you feeling energized. You can't afford not to.

[jazzlover]

   Will today be the day someone says??awww?you look fine?.you?re not sick!?

---I like that one, artsy! Type it up and send it out!!

Someone on my Facebook said today that her New Year's resolution was "I'm not going to take any S**T off of anyone!"

[Luna]

I have had this darn illness for a long time. Suffering severe for at least 11 years now. But only just found out what it is this past summer. All these years, while suffering so, I learned not to waste my time on what does not need it. And that includes people who are of no good to me.
Someone like that chic would definatly be someone I would not continue to call friend or waste my time talking to. I feel lucky that I have already weeded out the non real friends from the real ones before I even knew what my disease was.
Im sorry she acted like that to you. She is a self centered person if she is like that. You deserve better. That chic does not deserve the name friend. I am so proud of you for saying no. That is hard for a lot of us to say. But we have to learn to do it.

Luna

[mshistory]

artsy, I like your letter - it does a great job of describing the many different ways SjS affects us beyond our eyes and mouth.

And I love the "You're right, I'm not sick. I just don't want to babysit for you" response! 

[eyeamdry]

Amy, the most important thing is you said....NO......  What a big favor to ask of someone who is not related or the job being well paid.  Usually babysitting is not well paid. Just say no, just say no.  Lucy

[artsyamerican]

Thank you guys! I love and so appreciate your humor and your support!  Have a great New Year!

[rudytudy]

Artsy, I hear ya !!
I've stumbled at least four time in the last two weeks....weak ankles, imbalance, foggy thinking caused me to bump my head a couple of times and had two bruising/abrasions falls on a brick walk....well I told my friend about it on the phone when she asked me how I was doing these days...she knows I have SS.   She says to me "oh everyone I know knocks their head all the time...your FINE...you're not sick!"     This just stuns me...I just sit there silent on the phone with the ignorance.   I do know this friend and understand her motive is to encourage me that I'm really OK.   I know truly that this is HER way to deal with how this disease frightens her so that's why I'm glad I have you all and this encouraging discussion group.
I've had this disease for over a decade but just diagnosed in November.   
Having a cervical MRI in two weeks as Neurologist suspects MS lesions on spine.  but whatever, I just am glad you all are  here.
Gina

[KellyG999]

Welcome, Gina! I am glad you found us.

Please let us know how the MRI turns out! We'll be thinking of you and hoping for good news!

KellyG

[artsyamerican]

Yes...I'm sure the "you look great" or "everybody has that" comments are sometimes meant to help YOU not freak out over your illness...BUT sometimes they come across as dismissive.  I think the best comment you can give someone when they complain of an illness is..."I'm sorry you feel so rotten....I'll be sending positive vibes (prayers) your way."  Or offer to help in someway.  Even though I hate asking for help...just knowing there are people out there who are available...is comforting.

[Pisces24]

I used to have a co-worker who was very dismissive about the times I did not feel well and came to work.

With her though, the attitude was that anyone that came into work sick was out to get her sick personally!    Being a BC survivor you would think she would understand and be sympathetic but no way!  Whenever she got sick, she was mad at everyone and really complained & milked it for all it was worth. The world centered around her = period. In time I finally got her to realize that she had a compromised immune system just like me.  Prior to that she drove the office nuts and the boss had to get after her.

I got the, oh you are fine and you don't look sick, so many times I just learned to ignore her, My boss was the only one that knew and I wanted to know about my Sjogrens. Boss knows the times I have toughed it out and NEVER complained.
It is durn hard to educate the ignorant who do not want to be educated.   

Love that phrase.

[A66eyroad]

Another line I've memorized and practiced so that it just tumbles out without my having to think: It's hard enough for me to accept what I'm going through. I don't need the extra stress of trying to convince you."

[angielyn]

I deal with two sides to this "You don't look sick" issue. I of course hear that all the time! But, I also have a constant dry cough, dry lips, swollen glands etc. so now that winter is here the second I cough someone says. "Oh, it's going around" LOL Yea... sure it is

[Narablueeyes]

Another line I've memorized and practiced so that it just tumbles out without my having to think: It's hard enough for me to accept what I'm going through. I don't need the extra stress of trying to convince you."

YES!!  I'm going to borrow that one, if you don't mind.