Before my lupus diagnosis, I don’t think I knew what it felt like to be powerful. I also never knew what it felt like to feel almost powerless. And that’s the funny thing about my life: To know how it feels to experience one extreme, I need to have experienced the opposite end of the spectrum.
The further away I move from the time of my diagnosis, the more my recollection of that period blurs. For the first four months, I lived in a state of shock. I felt lucid. It didn’t feel like I was walking around in a cloudy haze. But the more distance that gets put between the Australian winter of 2016 and today, the clearer it is that I was not a complete version of myself.
And it was in those months that I learned what it meant to be both powerless and powerful.
To understand my story, you need to know that before lupus I didn’t know what it was like to grieve. My grandparents died either before I was born or when I was too young to understand. The first person I ever had to grieve the loss of was myself.
The hardest thing to come to terms with during the grief process is acceptance. How do you accept the fact that you’ve lost the person you knew better than anyone else? And how do you learn to accept the loss when it wasn’t your choice?
It wasn’t a long, conscious process as I said goodbye to a toxic version of myself to move on to vital new beginnings. It was a sudden and unprompted jolt into a new reality that came without warning. Lupus entered my life like a bolt of lightning, leaving nothing but devastation and destruction in its wake.
In my 20 years, I’d never felt powerless in the way that lupus made me feel. I remember a night when I was wide awake at 2 a.m., exhausted and unable to sleep because of heavy doses of corticosteroids.
There’s a kind of quiet that only the wee hours of the morning know. It was in that silence, as I let tears roll down my cheeks and stain my pillow, that my deepest reflections occurred. As my body ached from the effort of existing, and my mind begged for slumber, I knew what it was to feel powerless.
And it was in a moment of utter powerlessness that I made the most crucial decision of my life. Lying on the couch one day, I realized that I was sick and tired of living life horizontally. I was sick of living life on lupus’s terms.
It was my life, and it was time I took it back!
My life changed in that instant. I vowed to turn my greatest tribulation into my most notable triumph. That day I changed my title from “lupus victim” to “lupus fighter and survivor.” In doing so, I created a spark of power that had a ripple effect on my life.
It was at the hands of my chronic illness that I was made to feel insignificant and powerless. But it is because of my lupus that I have become the most powerful version of myself.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.