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Katie Madison

"Since I was diagnosed with Sjögren's, I have learned..."






Since I was diagnosed with Sjögren's, I have learned that Sjöggie’s are such a force to be reckoned with. I have turned to this community for support when I’m desperate and for strength when I’m low. I’m so proud of this community of Sjöggie’s. We’re truly family. I appreciate the Sjögren’s Foundation for this campaign and love sharing everyone’s stories to my personal page to educate my friends and followers!

How would I describe yourself in one word? Resilient

What are my top three most difficult symptoms to live with? Dysautonomia (Lightheadedness/Nausea), Migraines, and Extreme Fatigue

What is my most difficult symptom that people don't understand? Fatigue. It’s not being tired, it’s not what you feel after a long day at work. It’s your muscles refusing to work, your legs refusing to carry you around, your arms refusing to be raised up. Extreme fatigue feels like these functions don’t even work for us anymore, and bodies are weighed down by sandbags so every little motion seems ten times harder and more draining. The fatigue is intense, and I would love if people understood we aren’t being lazy or complaining. It can be paralyzing for some of us. Some wake up with this fatigue, some develop it after a busy or stressful day, and others it hits us like a brick out of nowhere. 

What do I wish people knew about your Sjögren’s? I wish people knew that all of us with Sjögren’s are trying our best. When we say no, it’s hard to do because we have to look out for ourselves and rest. Before we go somewhere, we have to plan every second of the day to be prepared for a sudden symptom or pain. Please give us grace and understanding while we find the effective ways to manage our Sjögren’s for each of us, because we’re trying our best. 

What’s my best Sjögren’s tip? Change how you think about Sjögren’s so that it works WITH you. This doesn’t have to be a nasty disease trying to destroy us. It’s our body’s way of begging us to slow down and notice what it needs for bettering our lifestyles. Our bodies are trying TOO hard to protect us, and we should thank them by supplying them with the best nutrients and lowering stress as much as we can. Sjögren’s is our wake up call to living life healthier and more intentionally.