I can't begin to count the number of comments and emails that I have received in which sjoggies express their happiness when they find another group of sjoggies. We always say the same thing, in different ways perhaps, but always the same meaning:
I GOT it.
And.....
Now I GET it.
That's pretty much sums up the experience of being diagnosed with an autoimmune disease.......then living with an autoimmune disease.....then understanding what it means to live with an autoimmune disease, doesn't it?
Like, I got Sjogren's syndrome. But now I get what Sjogren's syndrome is all about. And meeting other sjoggies who "get" it is just as therapeutic as the pills that I pop every morning.
Like many other chronic illnesses out there, one of the commonly overlooked effects of this disease is a sense of isolation which for me was almost as frustrating as the fatigue and inability to return to my job. I'd sit at home and wonder if my diagnosis was correct, or if I was just being lazy, or imagining things. But once I was introduced to the sjoggie online community, my world opened up in front of me right on my laptop computer. There I found real understanding and empathy, information, and real friendships.
I'm so fortunate to know all you wonderful folks who (unfortunately) GOT it. But (thankfully) GET it.
4 comments:
nicely said!
I am very fortunate that my mother has sjogrens as well( lucky for me- not so lucky for her).Whenever I have a " is this sjogrens? or is it something else?" I give her a call and invariably get a compassionate and understanding answer.I really value her experience and it makes me feel not so alone.
I love that I am not alone... but seriously I still wonder... do I have the right diagnosis???? Sjogren's presents so differently for every case... sure similarities with each case things we recognize in ourselves but then there are differences.
I got it... and I get it!
ToOdLeS.
When you suffer for years and years, and all your tests are normal and negative for whatever the doctors are testing, you stop and wonder if you're not making things up or having an overactive imagination (read hypochondriac). But then, by some miracle, your tests start coming back with some strange results that have the doctors baffled and then comes the AHA!!! moment....I really am sick,and it's not cancer....BUT WHAT IS SJOGREN'S...never heard of it!
Thankfully,I've found Julia and her blog; both have helped enormously, as there is not much information out there on sjogren's. Who better than sjoggies helping other sjoggies with first hand knowledge of the disease.I am eternally grateful for all the help and all the laughs you share with us, Julia. What a great bunch of people you are.
Well said ! having the name of the disease helps a lot, but finding informations about it. And people that can understand you, that's so valuable !
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