More than 25 years ago, life handed me a pair of shoes I never asked for. Those shoes came with a diagnosis: lupus. They were uncomfortable. They didn't fit my lifestyle, my plans, or the life I knew. And if I'm going to be completely transparent, those shoes were ugly.
I didn't want them. I didn't want to wear them. And I certainly didn't want to accept that they belonged to me.
I was embarrassed. There was something about being told I had a disease that troubled me deeply. And now I was being told I had a disease I knew nothing about, one that had no cure.
I had questions I didn't know how to ask. I didn't understand what was happening inside my body, what my future might look like, or how I was supposed to live with something I had never even heard of.
Then came the steroids. It seemed like my face changed overnight. I cannot tell you how many times I stood in front of the mirror searching for Nikkii. I was looking for the face I recognized before the medication. The confident woman who believed she could do anything because she was sure of who she was.
The reflection staring back at me was unfamiliar. It was about watching my body change without my permission and feeling powerless to stop it. I cannot tell you how many times I stood in the shower and cried.
My family was there for me. I was loved. I was supported. But loving someone through an illness and understanding what they're experiencing are two different things.
Mentally, I was drained. Emotionally, I was overwhelmed. I cried secretly more times than I can count. My mother never had to say, “I wish I could make this go away for you.” I felt those words every time she drove me to an appointment, squeezed my hand during a blood draw, and watched me cry in pain, even on the ER floor.
Early in my diagnosis, I was in and out of the hospital. I remember being alone in my hospital room. The room was dark. I was crying, holding the arm where a needle had been placed.
And through my tears, I said, “God, I don't want this to be my life. Just let me get out of here, and I will educate myself. I will learn how to live with lupus.”
Acceptance didn't happen overnight. There were still difficult days, changes I couldn't control, and moments when my body reminded me that this disease was part of my life.
But over time, I stopped measuring my life only by what lupus had changed. I began finding peace in understanding that I could acknowledge my diagnosis without allowing it to define everything about me. Some days are good. Some days are difficult. Some days require me to slow down, change my plans, or simply give myself permission to rest.
More than 25 years later, when I look in the mirror, I see a different version of Nikkii. There are still pieces of that familiar face I once searched for. But I've come to know and love the woman looking back at me today.
Am I a better version of myself? Yes. I believe I am. Not because lupus made me better. I'm better because of how I've chosen to live with it. My peace came through acceptance. And acceptance didn't leave me defeated. It empowered me.
“How I feel can change from day to day. Who I am at my core does not.”
My heart is still my heart. My ability to love is still there. My peace belongs to me. And even when sadness finds its way into my life, it doesn't erase my strength, my identity, or everything I've learned.
I no longer stand in the mirror searching for the woman I used to be. I know the woman I am today. Today, I feel more empowered than ever before.
As the years passed, I began encountering other people living with lupus. Every time I met someone, I remembered what it felt like to be that person with questions, fear, and uncertainty.
I began giving journals to lupus patients, encouraging them to write. A place for their questions, their fears, their frustrations, their prayers, their victories, and even their tears. Because sometimes the first step toward finding your voice is having a safe place to write what you're feeling.
Somewhere along the way, I found the words that would become the heart of my purpose. The person who listens without judgment. The person who understands. The person who doesn't expect you to be strong every moment of every day. The person who can offer understanding, share resources, and help you feel connected.
Because no one should have to navigate lupus alone.
That promise is the heart behind the Lupus Resource Network of Georgia. It is for and about the lupus community. It is for the newly diagnosed, current warriors, those searching for answers, family members, caregivers, and the families of warriors who fought until their journey ended.
Every story matters. Every voice deserves to be heard.
No One Should Face Lupus Alone.
With love, understanding, and peace,
Nikkii
Founder, Lupus Resource Network of Georgia