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Why My Life With Lupus Is About the Destination, Not the Journey


I’ve read many inspirational posts and quotes that assert life is about the journey, not the destination. This is supposed to remind us all that life is short and to always accept and cherish the present for what it is.

I used to really connect with this mantra. However, after being diagnosed with lupus, I realized that some parts of my journey are incredibly difficult to cherish, and sometimes it’s not about celebrating the journey, but focusing on where it might lead — my destination.

I still try to find the great moments in every single day, but there are some moments when I just need to think about the bigger picture and where I’m heading.

As I look back over this year, there already are moments where I couldn’t bring myself to love and live in the moment, as so many people strive to do.

Life can be painful and stressful and altogether unfair. And it’s in these moments that I won’t be forcing myself to stop, look around and appreciate the sunshine, but rather to remember that I need to keep moving toward my destination.

I’m a striver, a fighter, a bit of a perfectionist and an overachiever. I’ve always believed we shouldn’t set our sights on the bare minimum, but aim high and, if possible, climb higher.

And I still believe this.

But living with chronic illness has taught me that not every day is about breaking records and pushing the limits. Some days are about moving forward that one inch — that is both a victory and an accomplishment.

Every day I wake up knowing that a part of my life is in the hands of something I have little to no control of, and some of these days aren’t good ones.

It’s always a good day when my renal doctor says my kidney function is improving and all my test results show I’m getting better with every visit.

But it’s a bad day when I start to notice that my hair — the one thing I got to hold on to when I felt like I had next to nothing else recognizable — is starting to thin and fall out and I don’t know why.

It’s not as easy as it once was to take these bad days because when I find something new is happening to my body, I can’t just brush it off. It’s not simply bad luck or coincidence. There’s a reason behind it and usually its name is lupus.

But on those days, my life doesn’t come to a standstill. I have to keep moving toward that elusive destination, and it doesn’t matter whether I make it an inch or a mile, as long as I continue pushing forward.

I still set goals and still aim as far as I can in every aspect of my life.

I will achieve everything I set out to in my lifetime — that won’t ever change.

But these days I know I need to set myself free of time limits because it’s not my pace that matters, but my persistence and determination.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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