This article is part of our Breaking Barriers Spring 2022. This installment features articles on several young adults with disabilities ranging from tumors to limb differences to processing disorders and lupus who tell their stories of what it has been like for them. If you'd like to read more stories from this issue, please subscribe to Breaking Barriers.
I have always valued being seen as reliable and indispensable. During college, I was in as many extracurricular activities as I could to show how much I cared about causes and other people. Being an advocate with/for people is a good and beautiful thing, but there is a point that it becomes unhealthy.
In late high school and most of my time in college, I hit that unhealthy breaking point. For six years, I was slowly burning out. Then, in May 2018, two weeks after I graduated from college, I was diagnosed with lupus. This diagnosis helped me recognize many of my unhealthy tendencies around caring for others and forgetting my own needs. That first year was the hardest point of my life because I had to change my entire outlook about how I engaged socially and in work environments. In those first few months, I experienced horrible pain while trying to fight my physical limitations.
When I started going to therapy and realized that I needed to acknowledge my needs, limitations, and become an advocate for myself—not just with and for others—it shook my entire world. I had to reorient my whole way of thinking and being by facing that I was ableist toward myself and that there was ableism all around me. I still struggle with these things to some degree. I have to be very intentional with things like self-care and surrounding myself with people who will hold me accountable.
I have also been overwhelmed by how ridiculously expensive medicines and procedures cost. I have come to accept that I need more rest than most people do. With all of that, I realize that my limitations contribute to who I am, and I am grateful. I am grateful that I am now a more confident advocate for myself, and therefore with and for others. I am more aware of ableism and different forms of accessibility, of intersectionality, and of individual stories and corrupt systems. I also hope that lupus will help me flourish in ministry and help me show up to others in an authentic and empathetic way.
Since the onset of my invisible disability, there has been grief because I had to change so much about my current life and my future expectations. Being diagnosed at 22 also came with other complications: I experienced not knowing where I “fit”; I get told, “you’re young, so you wouldn’t understand chronic pain”; or I have to be different from my other 20-something, normative-bodied friends who still see themselves as invincible. With this, I have had to practice self-disclosure and have become more and more comfortable doing so.
Over the last few years, my faith journey has centered around my diagnosis of lupus and my work in seminary. Experiencing both of these simultaneously has been a gift. I have been surrounded by theologies of illness, disability, and suffering, and by caring people in all contexts of my life. Thoughtful pastors, professors, and theologians have helped me process my diagnosis and how it connects to my faith.
Studying Reformed theology while coming to terms with a chronic condition has helped me appreciate the gift of God’s grace that meets us where we are through a communion of saints that exceeds our imagination.