What It’s Like to Win the ‘Lupus Lottery’

What It’s Like to Win the ‘Lupus Lottery’

Through the time that surrounds the day that confirmed my lupus diagnosis, there is one thing that stands out clearly. As my nephrologist explained what lupus was and the different treatment options that were available, he introduced a phrase that will stay with me forever. He stated that, in terms of this particular chronic illness, I “had won the lupus lottery.”

He explained that the majority of lupus patients live with it for years before their health deteriorates to the point where they seek help, get a diagnosis, and start treatment. And in many cases of lupus nephritis, the disease has inhabited the kidneys undiagnosed for such a long period of time that it has often caused chronic, irreversible damage.

Compared to his worst-case scenario, I was young and active, had been diagnosed early. And, though my condition was acute, I had no chronic damage to my kidneys. As far as lupus goes, it was pretty much the best possible outcome. There were millions of tickets out there and somehow I turned out to be one of the lucky ones who held a winner.

The image that runs through my head when I picture winning the lottery carries significantly more elation and joy. Winning the lupus lottery is a cause for celebration, but only in the sense that there was the potential to wear so much more of a loss.

Essentially, what I won was time. Time to adjust my lifestyle and learn to live with lupus as a new and constant fixture. Time to experiment with different types of treatment and to work out what works in combatting my lupus specifically. Time to try to see if I could make the natural advantages of youth, like more energy and physical resilience, work in my favor.

I’m often left feeling torn. Compared to so many people out there, I’m aware of how easy my experience with lupus is. Yet somehow, I still don’t feel like I’m really winning.

Regardless of how well it all started out, in the long run, this is still likely to be my fate for the rest of my life. I apparently won the lottery, and yet a year-and-a-half into treatment, we’re still uncertain of the best course of treatment.

While being young has made it easier in some aspects, it also makes it harder in others. It’s harder because I’m hoping to have decades in front of me, yet they’ll likely be filled with health problems either from lupus or consequences from side effects of all the drugs I’ve used to treat it. The longer I’ll have lived, the more medication I will have taken to keep me alive. And there will be repercussions.

In truth, winning the lupus lottery is not really winning. It’s just being handed the lesser of all the evils available. It’s still just as devastating, heartbreaking, and isolating as every other case of lupus.

Unfortunately, when it comes to this evil disease there aren’t any winners. There is only the strength to fight back, the defiance to stick it to lupus any chance I get, and the choice to live life on my terms.

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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.

One comment

  1. Christine M says:

    I enjoy your unique point of view. This post made me realize how “lucky” I have been. Sometimes I am guilty of focusing on the los and things I can’t do or the extreme fatigue. I have no kidney damage and as of yet don’t need a nephrologist. It has been a rough few months but the new treatment seems to be making a difference. Hoping you have a good holiday. I know I will be even more thankful this year.
    Namaste

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