Act Now: The Risk is Real

"Will my hair continue to fall out?" This first question to my rheumatologist after being diagnosed with lupus would start a journey that I was not ready for. I felt alone with no one to talk to. I missed work. I stopped yoga - my favorite thing to do. I didn't know if I'd do these things again. I was overwhelmed. No one understood what I was going through. I began writing and it became mental therapy for me.

Writing was a safe space. I could express everything I was feeling and actively going through. I had endless questions, yet no concrete answers. Everything felt uncertain. The intense rollercoaster of emotions often left me in tears wondering, "Why me?" I felt helpless and alone. I'd read my thoughts aloud like I was talking to a friend, feeling both heard and understood.

Through writing, I finally stopped trying to make sense of my lupus diagnosis, learned to let go of expectations and found peace with my situation.

Approximately 40% of patients with systemic lupus erythematosus (SLE) will develop lupus nephritis (LN), and around 20% of those with LN will develop end-stage kidney disease (ESKD) after 10 years. 1 This is a risk living with lupus that I didn't want to believe. Kidney damage was the last thing on my mind - I was resilient. It wouldn't happen to me - but I've had several kidney issues.

My flares were severe. I gained 35 pounds of fluid from my kidneys not functioning properly, eventually leading to open-heart surgery in 2023. Every flare is different, but the mental strain is consistent. I try finding patience and grace within every flare.

After hitting pause on everything in 2023, I worked diligently to rebuild my life. It's challenging not knowing when I'll face another flare, but my diagnosis keeps me motivated. Lupus is a delicate balancing act, but I believe in myself and my strength to overcome. 2024 has been a slow build, but I'm back doing what I love and figuring things out one day at a time.

My story's real, and I want to share it with others, so they understand what happened to me can happen to them. I decided to not let lupus define me. It's hard and takes time, but that mindset empowers you. Be selfish. Prioritize yourself.

Talk to your doctor about the risks of associated with lupus. Don't wait. Go. Talk. Now.

This content was sponsored by GSK, a member of AKF's Corporate Membership Program at the Champion level.  GSK paid Victoria for her time sharing her lupus journey.

1 Hanly JG, et al. Rheumatology (Oxford). 2016;55(2):252-262. 
Tektonidou MG, et al. Arthritis Rheumatol. 2016;68(6):1432–1441.