I was diagnosed with Lupus in March of 2022, in the spring of my freshman year of college. Following two years of pandemic life, familial loss, and the grief of leaving childhood behind and embracing adulthood, it seemed cruelly ironic that a health crisis would be the cherry on top of it all. It felt like coming to the end of one wearying journey, just to begin another. On one hand, it was a relief to have an answer to all of the questions I had been frantically typing into Google, such as “Why are there hives all over my body?”, and “Why am I so fatigued and retaining water?” and my personal favorite, “Why do I get a butterfly-shaped rash on my face after being in the sun for too long?” (seems… obvious, no?). On the other hand, being able to pin all of my problems on a neat and tidy acronym like SLE provided little comfort, unsteadying the future that I had plunged into college so ready to pursue. 

 Although I wasn’t diagnosed with Lupus until I was eighteen, the condition has played a defining role in my life for as long as I can remember. Growing up, my mother Betsy’s journey with Lupus has been the foundation of my understanding of the importance of community, the miracles that Christ can work, the challenges of living with an autoimmune disease, and the way that hardship can be used to encourage other people. As a piece of family history, my mom’s Lupus struggles were a regular topic of discussion at the dinner table and testimonies from the church stage. Her story and the integral role that healthcare professionals played in it has even inspired me to look into studying nursing. Lupus has been present in so many spheres of my life. I even gave a speech in English class about “How An Autoimmune Disease Helped My Family”, for crying out loud. I remember little from that presentation, but there was one statistic I could never shake: having a mother with Lupus increased my chance of diagnosis to 1/20. Just 5%. I sought security in the promise of health of the other 95%, trying to convince myself that such a thing couldn’t possibly happen to me. But the unpredictability of genetics placed an unshakable question mark above the future. What if I am that 5%? What if this is my future too? 

 These questions lingered throughout the next few years, as we started making doctors visits for strange little things that would pop up: a thyroid nodule, pressure hives, skin dysgraphia, water retention, pain in my hips, migraines, facial flushing, burning rashes in response to sunlight. I can’t count the number of times my mom typed “_____ connection to Lupus” into online search engines. Although the wheels were already turning in our heads by the time I was in late middle school, doctors didn’t seem concerned. Each specialist we went to dismissed our Lupus hypothesis, instead pegging my strange symptoms on something within their wheelhouse of expertise. I even have a treatment sheet saved from a dermatology appointment about two years ago, in which my doctor wrote, in large blue sharpie, “not likely Lupus”. It was frustrating to feel like our concerns weren’t being heard, and I am so thankful for my mom’s experience because she knew what to look for and became my fiercest advocate. I can’t fathom how much longer it would have taken to get a diagnosis without her knowing what to look for and what questions to ask. In January 2022, we finally got my pediatrician to run the Lupus diagnostic tests. I was living with some friends in a condo in Iowa at the time, doing virtual college classes, so I was away from home when my parents called to let me know that the results were in. I remember walking upstairs in a daze and having to utter three words to my friends, my voice breaking, that I prayed I would never have to: “I have Lupus”. 

The following months were a whirlwind of trial and error and adjustment and coping. I am fortunate enough to be seen at the Mayo Clinic and had to road trip down from school multiple times throughout the course of the spring to meet my doctors and try new medications and get vials and vials and vials of blood drawn. Learning where my limits are and what triggers flare-ups has been a particular challenge, especially when coupled with grieving the loss of a “healthy” future and being a college student with a chronic illness. I would watch as my friends heaped curly fries onto their plates in the dining hall while I ate the same tidy little salad every day, trying an anti-inflammatory diet. I had to learn how to ask for extensions and accommodations in case I were to have a flare-up and miss class, something that my type-A, perfectionistic heart truly struggled with. But most of all, I had to learn to let other people walk this road with me. I have always been an internal processor, someone who can handle my problems myself, so letting my friends into how I was really feeling, and not pretending that I was okay all the time was a challenge for me. Because, honestly, I wasn’t okay. I spent the beginning of my second semester wondering why I have to grow up so much faster than everyone else around me. All of my friends are living carefree lives, unburdened by the uncertainty of the future. I am having to deal with things that many of my peers won’t face for another fifteen years or so. On top of that, everything I have hoped for is being questioned. I want to be a humanitarian aid nurse, living internationally and helping to improve the health of other people. All of a sudden, I don’t know if I will be able to live a plane ride away from the Mayo Clinic, or if it is wise to surround myself with the illnesses of others with a compromised immune system.

 And yet, nearly six months later, I’ve slowly come to understand things differently. I’ve already seen the beauty coming out of the opening chapter of this story. While Lupus has disrupted my plan for what my first few years of adulting would look like, I am amazed by the discipline and maturity that is being cultivated within me. I have come to understand that I am gaining wisdom daily that I can use to guide other people when they begin to experience similar challenges down the line. I am being equipped daily to love other people through my disease, and for that, I am so grateful. Lupus has already provided the opportunity for such growth, and I am truly so excited to see the harvest that the Lord brings out of these circumstances. Lupus hasn’t kept me from living a beautiful, full life yet (on my worst fatigue day thus far, I was still able to climb an Angel’s Landing-esque cliff made of lava rocks- barefoot- and dive twenty feet into the ocean at sunset!) and it never will. I have a bigger mountain to climb than most as an eighteen-year-old, but it makes the moments at the top that much sweeter. 

 I am also grateful to Lupus for the way it has allowed me to emulate my mom. Not only did I inherit her hazel eyes and broad-shouldered farmgirl build, but I also scored her janky immune system. Woohoo! (Add on top of that the big forehead I got from my dad, and I think you could say I won the genetic lottery) I always said that I wanted to grow up to be just like my mom. This isn’t exactly what I meant. And yet, it’s such an honor to walk alongside her in this. Her advocacy, her compassion, and her advice have been an unbelievable balm to my soul. I don’t know where I would be without her guidance, and the gift of walking this long, hard road arm-in-arm with someone who understands. Knowing her story has been terrifying at times, as I try not to assume that comas and kidney disease and the desperate need for miracles will automatically be a part of my story because they were a part of hers. On the other hand, I have already seen the beauty that comes from her story, like stunning community support and evidence of the Lord’s provision in desert seasons. And so, I have hope that the same will be true for me and that my journey can be used to touch as many hearts as hers has. 

 There is a bible verse I found shortly after I was diagnosed, that I have adopted as the anthem of my adventure with Lupus. “But I am like an olive tree flourishing in the house of God; I trust in God's unfailing love forever and ever. I will praise you forever for what you have done; in your name, I will hope, for your name is good'' (Psalm 52:8-9) As my name means olive tree, my prayer has become that Lupus will enable me to grow daily in maturity, wisdom, and compassion, and to flourish in a new dimension of closeness with my savior. Admittedly, I am still facing question marks and struggling with grief and frustration, and bitterness daily. I am still learning about my body and the activity of my disease daily. But I find comfort in the fact that, no matter how Lupus impacts my future, the end of my story has already been written by an author who is gracious, gentle, and good. And so, everything that Lupus may throw at me included, I can’t wait to live the rest of the story, day by day. I’m so grateful to have all of you walking with me.