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Sjogren's Syndrome Support

Need a hug

Feeling really bad and in need of a hug. A cyber hug will do.

Melinda

Hi Mea! Sending a big hug your way!

Some days are just tougher than others, I get it. Hopefully today has already become a bit easier

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Thanks, I had need. Today, Thursday, woke up and the day is a bit better than yesterday. That’s how it is for me now, one day, lots of downers during the day, sleep the night thru, wake up, the next day, downers mixed with a few ups, go to sleep, and that’s how it is for me. I so wish, many days, Sjogren’s did not exist, especially inside me. I do have many problems recently, because Sjogren’s continues to be the ‘invisible disease’, and that really makes living with Sjogren’s, emotionally painful. I gave up trying to explain why, just increased my frustration and feeling sorry for myself. That’s a bummer, feeling sorry for myself. I’ve started to wonder, what if instead feeling sorry for myself, not to feel sorry at all, not looking at the pluses of Sjogren’s, just not think about Sjogren’s and me at all.

What’s the worse part of having Sjogren’s, the isolation because so many just can’t get how good I look despite having Sjogren’s. How can I look good, yet claim can’t, due to weakness and my endurance is so low, I AM no fun at all.

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Invisible diseases are very challenging, no question. I need to tell people that I can’t do something. I’m just too tired, not feeling well, etc. And why. I tell them why.

You know, Stoney, I just wish people would stop and not ask why am I not feeling well. Why can’t people just take my word and maybe say something nice?