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P2P - Kathering

Katherine 40
Patient-to-patient topic: Getting Diagnosed
When I was diagnosed with Sjögren's I had never heard of it before. I was told it was just dry eyes and dry mouth, end of story. I was (and am) suffering from debilitating fatigue and brain fog, but my rheumatologist insisted those symptoms were unrelated to my multiple autoimmune disorders. It was only when I started reading about Sjögren’s on the Foundation’s website that I was able to connect the dots. Once I was able to finally stop searching for the cause of my symptoms, I was able to start trying to effectively manage them.

Most difficult symptoms: Fatigue and brain fog.

How has Sjögren's impacted my life: Getting the diagnosis has allowed me to stop blaming myself for my fatigue, thinking I'm weak and just need to keep pushing. I work a lot less now and my family's finances have certainly suffered for it.

What is my best advice for another patient dealing with this symptom/ situation: Rest when you need to rest. If you keep trying to push through, you could make your situation worse.

How do I incorporate self-care with managing Sjögren's: I rest when I need to, every day. I also go to acupuncture, which has really helped even though I didn't think it would, and since that has been so effective, I do qigong most mornings.

What’s your best Sjögren’s tip? Make caring for yourself a priority. It really is the only way you'll be able to then extend care to others.

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