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Sjogren's Syndrome Support

Nobody seems to understand

So here i am wondering why it seems as though the one’s who should try to understand…DONT :frowning: Does anyone else struggle with “significant others”?thinking that our struggles with this illness and whatever other illness we have ( cause i know there are many of us here that have multiple illnesses) , are easier then we think, or i hear alot of “well i can do it why cant u?“or how about this one,” If u just think positive it wont be as bad”… Or this one,and i hear this alot, “there are peole worse off then you and they do it so whats your excuse”? OMG! I feel like smacking someone! Lol I just wish there was a way that the ones we are with, or our families or friends, could somehow spend one day in these ailing bodies so they can maybe just maybe try to look at it from our shoes! Not much understanding over here…

See oh you can find the site Mystery Illnesses. There is an episode called The Woman who couldn’t cry. I found it online. My husband watched it and understood more about sjogrens from that then anything I said.

I find it very frustrating that many of my doctors don’t understand. They think it is just a matter of using eye droPs. But, my husband and very close friends understand as they have seen the disappointment on my face when I can’t dO things. Hopefully by communicatiOn and observation they will figure it out. I’m so sorry; very frustrating for sure

Thank u Shanni for that recomendation i will look into that site :wink: I also have Lupus ( SLE) and so far i dont have total dryness, lots of eye redness and a ton of fatigue joint pain and swelling… But im starting to motice alot more druness of my mouth and such.

Nomad,
Thank u too for your kind words and understanding , its a hard road and your lucky to have a husband that wants to educate himself, to better learn to support you… Mine used to until i progressively have gotten worse symptoms and depression from it… You know its the whole " your just not motivated to do anything/ your lazy" sooo that seems to be the thing for me at the moment… As far as doctors go, i understand that as well, it just doesnt seem to make much of a difference what they prescribed or attempt to poke u with, there just isnt enough out there for them to do for us i guess…

here’s the link on youtube no website as described and the original series has been deleted.
hope this helps

https://www.youtube.com/watch?v=5bahu5kZY-g

Meant to say yes no one understands except most other SS sufferers.

Try being a male with it - it's even worse no one believes you "cos it's a women's menopausal disease!"

Hey Niki….totally been there. I am recently divorced after more than 17 years together. He could never truly understand what was happening, which I kind of understand as I didn't know where all the pain and fatigue was coming from either. BUT…I would have days I was in so much, whole bodied pain that I could not move. Heaven forbid it happened on a day he wanted to go boating. Then is was a screaming angry fit that I just wanted to ruin his plans and I wasn't in that bad a shape. Did I mention we had an ocean racer, not a nice comfy cabin cruiser?

Even now - I have many years dealing with the progressive symptoms and have learned a whole lot very quickly since my diagnosis - I have people tell me to "just keep a positive attitude", or you should change your diet, you should exercise more, etc. I already do all of those things. I think people here have caught on that I have a bit of a snarky sense of humor with stuff like that so I understand wanting to smack 'em….. Once when someone was all over me about how much a positive attitude would change my level of pain and functioning I told them "Let me smash your hand with a hammer. Then you can tell me how positive you are feeling" They didn't mention it to me again. LOL