What it’s like for me to live with Sjögren’s

April is Sjögren’s Awareness Month. Every year, the #ThisisSjögrens campaign takes off and I find myself speaking out in the hopes that someday our world might start to take this disease more seriously.

Symptoms I’ve learned to live with

Sjögren’s is not a cookie cutter disease. It’s not just a “dry eyes and mouth” disease. Sjögren’s affects everyone differently and there is no roadmap for any individual, even as it attacks the joints, lungs, kidneys, blood vessels, digestive organs, nerves, and more. Since I was diagnosed in early 2017 with Sjögren’s, I have developed distal renal tubular acidosis (a rare kidney disease) and interstitial cystitis. Both are very painful conditions to live with.

If you’ve ever suffered from a UTI, then you know what interstitial cystitis feels like. An episode can last anywhere from 3-14 days when you experience a flare up. Some folks choose not to work or simply cannot work during this time because the symptoms can be so debilitating.

Kidney stones are equally painful and can cause many symptoms, ranging from extreme flank pain with nausea and vomiting to more “simple” symptoms like bladder inflammation and irritation. I keep a strainer under our bathroom sink just to pan for gold and see if I can differentiate what I’m experiencing (UTI, kidney stone, or just bladder inflammation) on any given day. I now have a slew of cups for urine samples to drop off at the lab every time I feel the onset of my symptoms.

Staying home even when you don’t want to

In the midst of a pandemic with a toddler, I don’t feel as stir crazy as some. For the last 6 years, I’ve mostly worked from home. In the last year and half, I’ve seen many of my best laid social plans fall apart because I’ve struggled with managing my symptoms. Frankly, it’s hard to go anywhere or do anything if you’re stuck on the toilet in pain all day.

Life with Sjögren’s makes you appreciate the days you do feel comfortable or pain-free when you’re at home.

Hoping for the best, preparing for the worst

There is no cure for Sjögren’s. There is no end in sight for my symptoms. The best I can do is speak up to my doctors when problems present themselves and ask for help.

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