I have Sjogrens. I was told it wasn’t causing my neuro issues and it was. It absolutely was and still is.
I started treatment for Sjogrens and it’s helped.
This is post is for the people who feel misdiagnosed and no one else. I felt misdiagnosed and I was. Let this be a reminder to keep searching if it doesn’t feel right.
And it is not a dual diagnosis, either. It’s a misdiagnosis that could’ve done lasting damage had I agreed with the cc doctor.
I’m a woman in my early 30s. I got the positive blood test back a year ago now. This was after suffering from nearly life-long joint pain and awareness that I had some sort of autoimmune condition.
Bizarre visual issues began in my mid-twenties, followed by unexplained kidney damage. Then, at the end of 2024, after a traumatic loss, I developed a tremor and other neurological issues. It was during trying to find out the cause, my sjogrens came back positive. (It had been negative the three times I’d been tested in the past).
I’ve been flaring badly lately, which forces me to stare down my reality. And I don’t like it.
Previously, it was undefined and unknown, which I preferred because, now that I have the diagnosis tacked next to my name, it’s like a pit in my stomach has opened up. I can now learn about Sjogrens, which seems innocuous until, it hits me that I’m learning about what my future, or lack thereof, will hold.
And so that pit has now widened more and more to the point I feel like I’m being swallowed whole by it, which is why I’m here.
I’m so tired - not just physically, but emotionally - I cry out of sadness and frustration that I can’t escape this, but then I cry harder because I love life, and why would I ever want to escape this?
I’m not a risk to myself, but I’m genuinely burdened and worn out.
I know I’m in a loop where I’ll eventually go back to denial, but I just wish it wasn’t so hard to exist just today, in this moment. I also wish I felt less scared and less overwhelmed.
Can anyone else relate to the feeling? I’d really appreciate any words you might have. And thank you for reading what I’ve had to say.
Xx