Why You Need a Lupus Role Model
When I first became sick with lupus, I was a twenty-year-old college student majoring in music performance. My life was filled with books and exams, orchestra rehearsals, and practicing the viola. The world of classical music is a more close-knit community than most fields of study. All of my college friends were musicians, also, with the same goals and lifestyle as mine. When lupus disrupted my life with crippling fatigue, memory loss, and clumps of my hair falling out, what hurt most was feeling isolated from my community.
Striving for "success"
I had plenty of role models to chose from in the field of music. My teacher in particular had won positions with both major American and German symphony orchestras. She had soloed with orchestras and placed in international competitions.
Her work ethic and success made her students look up to her. We all strove to play our instruments like her. More importantly, she provided hope to her students. If we worked as hard as she did, maybe we also had a chance at making a life for ourselves within a challenging and often unforgiving field.
Searching for the right role model
When lupus entered my life, I found myself consciously and unconsciously searching for a role model. I studied my classmates, teachers, and any successful musicians I came across. Could any of them provide an example of how to perform with memory loss so severe they could barely remember how to read music? Could anyone teach me how to last through a three-hour orchestra rehearsal when they were too sick to even stand? Was anyone else struggling like I was?
At times in our life when we feel lost, a role model, or big brother or sister, can be a lighthouse in a storm. They show us a path forward through the storm. They give us hope that we can still succeed even when faced with what seem like insurmountable challenges. They make us feel less alone.
Shifting my perspective
It wasn't until I shifted my perspective that I found the role models I was looking for. Maybe my goal shouldn't be to push past the pain and fatigue as I clung to my original goal of being a successful orchestral musician. Maybe my goal should be to focus on being, not the most successful version of myself, but the healthiest and most pain-free.
Finding a lupus support group
When I joined a lupus support group, I finally found the role models I was looking for. I walked into that first meeting so used to feeling like an outcast that I had almost forgotten what it felt like to be accepted despite my disability.
Slowly, I learned to speak up about my experiences in meetings. Rather than receiving blank stares or looks of confusion, the other women in the group had answers when I asked how to handle hair loss or nausea. They could relate when I said I was too exhausted to work and responded with sympathy and knowing nods. I went from feeling lost and alone to being surrounded by an entire room full of strong role models.
Becoming a role model for others
Twelve years after I first became sick, I've learned so much about balancing my goals and life with a chronic illness. But I'll never forget how much I struggled those first few years as I searched for others who could show me how to survive through what seemed unlivable. When I meet newly diagnosed patients, I commiserate with them, then welcome them to the community. I try to be the role model I once needed.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?