By Chelsea

A column by someone living with lupus for people living with lupus

Hello, my fellow lupus warriors and supporters! I am new to the Chicago community and began volunteering with the Lupus Society of Illinois in August. I am so honored to be a part of a local lupus nonprofit whose values and passions align with my own. This article is something I’ve dreamed of writing for many years. When I discovered LSI while relocating from Wisconsin and shared the concept, I was met with so much enthusiasm and support. Being encouraged to use my passion for writing and advocacy—and being given the chance to shape this project—means more than I can express.

I’m so excited to begin this new journey with you as I write a column for The Butterfly Effect. In upcoming articles, I’ll delve into my personal experiences, discuss advocacy, share tips that help me cope with daily challenges, and shine a light on what it’s like to live with such a cruel and incurable disease. I hope to highlight not just the importance of physical health, but the significance of mental and emotional well-being as well.

I will also explore personal battles and victories: the all-too-common delays in diagnosis, the ups and downs of medications and treatments, the search for the right doctors, and the ongoing self-awareness and advocacy required to adjust treatment plans through flares or unexpected side effects. I’ll share my story as someone diagnosed with systemic lupus erythematosus (SLE) in 2015, later diagnosed with antiphospholipid syndrome (APS), along with other lupus-related complications.

Living with lupus has taught me many things, but above all, it has revealed my strength—and the strength I must continue to hold onto. I will do my best to outline the realities of day-to-day life while highlighting the resilience within ourselves and our community.

We are not all on the same path, but I understand how important it is to share our stories of both tribulations and triumphs. By bringing forward the challenges of navigating daily life—triggers, flares, uncertainty—and by spotlighting the strength within our community, we show just how resilient we become when survival demands it from us.

Thank you for welcoming me into your lives through this column. I look forward to connecting with each of you as I share my experiences and continue this journey. Remember: you are not alone. Together, we can shed light on lupus and lift each other up through our lived experiences and unique paths.