There’s a Chance I’ll Never Achieve Remission, and I’m OK With That

There was a time when all I wanted for my health was to be in remission. In my mind, getting to say the word out loud and lay claim to it was the pinnacle of success. The ultimate act of defiance. It didn’t matter to me how long it took. It would all be worth it to finally, officially, stick it to lupus.

In the month before I was diagnosed in 2016, my health went downhill fast. In the space of a couple weeks, I went from seemingly having nothing wrong with me to being visibly unwell.

The thing about acute illness is that it’s easy to tell when you’re getting better. For instance, when my kidneys were impaired, I started putting on significant amounts of water weight. In the weeks following my diagnosis, diuretics worked their magic and my body returned to its previous shape and size.

But as time went on, improvement became more incremental and less apparent.

After two months, my disease progression was no longer visible to the naked eye. I’d reached a point where my health status was only evident to a medical professional via my blood and urine tests. To the rest of the world, I once again appeared healthy — and that’s where I’ve stayed since 2017.

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A difficult realization

Fast forward to now, and not much has changed. Don’t get me wrong, since my diagnosis, I have personally made leaps and bounds. But it’s been nearly seven years and I’m still waiting and hoping to hear the word “remission.”

For a while, I was patient and boldly optimistic. At every doctor visit I’d wait, hoping to finally hear that magic word. But after a few years, as my medication dosages remained the same with no signs of changing, I became realistic. Whether I was ready to or not, it was time to read the writing on the wall: There’s a good chance I’ll never go into remission.

That was a hard truth to accept.

I’d spent years fighting, working, and hoping to reach that one specific goal. Coming to terms with the realization that it might never be my reality was a real strike to the heart.

At first, I was disappointed. Then my brain took over and gave my heart a break, and I thought it through. In reality, achieving remission status is such a minor detail. When I survey my life, there’s nothing for me to be upset about.

So I might never get to label myself “in remission”? So I’ll never get to fulfill that dream moment of telling people the good news? So what?

Living with gratitude

I started this journey with an extra 12 kilograms (26.5 pounds) of water weight, acutely impaired kidneys, and a long list of other symptoms, including unbearable fatigue. But here I am today, writing this, with so much to be grateful for. Thanks to a cocktail of immunosuppressants and other medications, my kidney function is greater than 90%. My nephrologist wasn’t afraid to admit that given how much damage there was initially, the renal team never foresaw this level of recovery.

It hasn’t all been smooth sailing. But even with lupus, I now have the life I’ve always dreamed of. There are good days, bad days, and worse days, but they are my days to live as I see fit.

If I was born a half-century earlier, into a different era with different doctors and fewer available medications, who knows if I would have made it? When I view the topic through the lens of my mortality, the true triviality of the label “remission” becomes clear. I have everything I need.

I live my days smiling and laughing with a wonderful man, the love of my life, by my side. I’m fortunate to have an incredible support system of people who have seen me through my very best and very worst. And I have recovered better than doctors ever expected, achieving everything I dream up. I want for nothing.

It’s interesting how things change over time. I once placed so much emphasis on a single word, only to wake up one day and realize that’s all it is: a word. I have to admit that achieving remission really would be the icing on the cake. But I know I could spend the rest of my life wholeheartedly happy without it. I’ve always been more of a cake than frosting gal, anyway!

Kristiana and her partner, Felix, on Christmas Day. (Photo by Felix Will)

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.