How I Revisited the Definition of Being Sick After My Lupus Diagnosis
A chronic illness diagnosis can change life as you know it in an instant
In the six months that followed my lupus diagnosis six years ago, only a few moments aren’t clouded by a haze. Everyone responds differently when their life is altered beyond repair, but I went into shock.
If a genie had offered me a single wish, I would’ve asked him to put everything on pause. I needed the world to stop turning for a little while, just long enough to get my breath and allow my brain to catch up with reality.
As the sun continued to rise and set, my brain went into survival mode. On the outside, I was on autopilot, making my way through the days the best I could. On the inside, I was enveloped in a fog.
I remember certain moments from that period with perfect clarity. One is when my nephrologist gave me my diagnosis. He started with a spiel for context. While the renal team needed results from my kidney biopsy to be certain, they were 90% sure they knew the cause. Results from numerous blood tests already revealed high levels of inflammation, just as they’d suspected. Given the results, coupled with the skin lesions, malar rash, and fluid retention, they were confident enough to make an educated guess.
Then he said it, the single most life-altering word I’ve ever known: “lupus.”
It’s funny because until that point I’d never truly known health struggles — not in my own life, nor in anyone else’s who was close to me. I don’t have much contact with my extended family, and three of my grandparents passed before I was old enough to remember them. Life’s opportunities to expose me to chronic health issues had been scarce. My circle had always been small, close-knit, and full of relatively fit and healthy people. I’d been lucky. Somehow, I’d made it to my 20s without experiencing medical heartache in any capacity.
When I thought about the word “sick,” it was only in a temporary sense. To me, sick meant a cold or the flu; if we wanted to get really funky, maybe it meant tonsillitis or a sinus infection. It meant a short-lived break from being healthy, something you’d recover from in a few days or a week, tops.
When they told me I had lupus, one thought that crossed my mind was, “OK, great. They’re talking about treatment. This will be over soon.”
At the time, it never occurred to my sheltered and naive brain that “lupus” was not a word I could walk away from. I didn’t understand that when they talked about treatment, they weren’t referring to over-the-counter medication or a weeklong course of antibiotics.
It sounds crazy, but I didn’t know how bad it was. Sure, I was in the hospital, but it wasn’t that serious, right? It wasn’t until they started talking about treatment that my brain twigged. When the word “radiation” came up, I was shocked into reality. This wasn’t going to be like any of the other times I’d been sick. The only time I’d heard of radiation was as a treatment for cancer.
The day they discharged me, I left with a fistful of scripts. I had diuretics, antibiotics, immunosuppressants, three different types of blood pressure medication, and more pills to counteract the potential side effects of the first few types of pills. And even with this swag bag of medication, my brain still hoped I’d be better soon. It took me months to come to terms with the fact that the best type of “better” I could be wasn’t going to be what I wanted. There’s no cure for lupus — only treatment, management, and, if you’re lucky, remission.
More than six years on, I’m still chasing remission. A year or so ago, I realized that maybe this is it. Maybe this is as good as it gets for me. Surprisingly, I think I’m OK with that. It’s not what I’d hoped for, but it’s light-years beyond where I started. I’ve quieted the chaos, I (mostly) live on my own terms, and what I have is more than worth settling for.
At 20, I had to look at my life and burn all my plans. The universe bound me to a wild wolf and left me with a choice: I could let him drag me through life at his mercy or learn to run beside him. I’ve always had a bit of defiance in me, a little spark. But the day I chose to run, I turned that spark into a blaze.
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, and are intended to spark discussion about issues pertaining to lupus.