Kacey C. - Diagnosed at age 17

I was told when I was 14 I would have a stroke by 28 years old because of the symptoms my body was starting to produce. Unbeknownst to me at the time it was lupus. Officially diagnosed at 17 yrs. old I made it to 29 years old before that stroke came. Through my twenties, what felt like a death sentence, I struggled with excruciating muscle pain, swelling and an assortment of internal ups and downs all the while trying to carve a life out in this world that everyone tells you at that age “the world is your oyster”. 

The reality with lupus is that it’s really no oyster, it can be a dark abyss, that circles you like a shark. Everyday you have to choose to find energy and light your own way, navigating unclear paths through what feels like squinted eyes. It’s hard for me to even admit I have it, to admit its existence gives it life, gives it energy I’m not willing to provide. I’ve hidden it for as best I could for 18 years now. I did this because well I don’t look like a lupus patient. I’m lucky in ways. My skin isn’t as affected like many. I carry almost a guilt about it, not saying I don’t have skin issues but they aren’t as prevalent as some. 

All I ever wanted was to be normal, to not have my dreams taken away little by little, to do things I want to do. I live for everything. I’m always trying to be active, summers I fly fish, hike, and yes, I hunt. Winters I downhill, backcountry, cross country ski, ice skate. I live in a cabin in the woods where I chop all my own wood. I plow my driveway, I wake up in below freezing temps to walk my dog even though I know no amount of bundling and hand warmers and heated vests will stop the Raynaud’s from painfully nipping me the entire way. It’s hard to admit you have lupus. It’s harder to live like you don’t have it. I’m starting after 18 years to admit I do but in between the major battles, I’m winning and every time an episode arises I feel more ready to take it on because I know I’m truly living despite that shark that circles.