Lupus and the Beauty of Hindsight

Lupus and the Beauty of Hindsight


Though it took me some time to realize, there were certain things that I lost in the instant I was diagnosed with lupus. The saying goes that we never know what we have until it’s gone, and for me that couldn’t be truer. There’s a whole other life that I would’ve had without lupus, a range of possibilities and opportunities that are now out of my reach. But I never could’ve known how much I once took for granted if I hadn’t lost it all first.

If you had asked me at the beginning of last year what my life would look like now, my reply wouldn’t have resembled anything remotely close to my present reality. Though most of the major parts of my life – my job, the university, and my inner circle of friends and family – remain the same, what makes life are the little things, and from then to now, they couldn’t be more different.

The girl I was in January 2016 would’ve expected me to be approaching the halfway mark of a primary teaching degree, likely playing netball, and working in my little coastal café. What she never could’ve expected was lupus and all the horrible, wonderful, and life-altering things it would bring.

There are so many aspects of life that I never expected. I never knew that I would grow to envy others for the simple ability of waking up easily most mornings. I never dreamed that I’d long so desperately to be able to identify myself with a simple word like “healthy,” or that at times I’d feel so old at 21.

What I do know is that there once was a time when I led a life that so many – including my present self – dream of having, and I never truly appreciated what I had while I was given the chance.

Hindsight is such a beautiful, yet agonizing thing. I wish I could go back and retrace moments, not to change them, but to appreciate them for how incredibly special they were.

I’d spend all day in the sun at the beach just to once again have the chance to relish in a guilt-free moment that I’m no longer allowed to love. I’d go exploring overseas, to know the feeling of easy travel without dietary limits or boundaries. And I’d stay out all day before dancing my way into the wee hours of the morning, with the knowledge that nothing is coming back to bite me as a consequence of celebrating life exactly how I wanted.

But I can’t. My world consists of constantly second-guessing myself on every choice that I make, whether it’s what I’m eating, what I’m doing, how much sleep I’m getting, or how hard I’m pushing myself. Lupus has taken up a permanent space in the back of my mind, forcing me to question every decision.

I never appreciated how it felt to have every opportunity available to me, or what it was like knowing that I had complete control over my life if I wanted it.

Now that I can’t have it, I want it more than ever. I want to be the one to dictate my meals and my sleeping pattern. I want to remember what it’s like to be completely certain of a choice because it wouldn’t have an impact on anything else, and to know that for the most part, my future was in my hands and mine alone.

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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.

3 comments

  1. Robin Mutka says:

    “Horrible, wonderful, life-altering”….. I totally agree with horrible and life-altering, but nothing wonderful has come out of my lupus diagnosis. I’m wondering if that was a miss-placed word ? Otherwise, I totally agree with the article. It’s refreshing to read such truthful, emotional article. Too many times lupus writers try to put a positive spin on having this horrible disease but in reality at least my reality nothing positive has come from lupus…in fact lupus has ruined so much in my life and has robbed me, my husband and my children of a normal life.

    • Kristiana Page says:

      Hi Robin,

      I’m sorry to hear that lupus has had such a negative impact on your life and I can completely relate to how you feel. However, putting ‘wonderful’ in there was entirely intentional and though you may not want to hear it, I am one of those writers. But in saying that I’m not under the expectation that everyone will understand or that anyone may even relate to my way of thinking, and I’m absolutely comfortable in that.
      Lupus is a truly devastating condition and the raw emotion you read in any of my columns comes from a place of real pain and hurt, that I’ll likely spend my life trying my damnedest to resolve. Just like every other lupus warrior in this world I have been robbed of so much by my own body, however a lot of good has come out of my diagnosis in my life and that’s something I personally need to place emphasis on to keep on keeping on.
      Though we may not share the same perspective, I understand your struggle, your hurt and your longing; and know that no matter the day just like I am, you’re just doing the very best you can.
      I hope you’ll still read my columns and continue commenting, I’d love to hear more of your perspective! 🙂

      Best,
      Kristi X

    • Jennifer says:

      Yes lupus had robbed us all. I hate it. My life has been alter since 2004. I use to love dancing I still do but get tired too fast. Traveling omg. I traveled last year and once I got to my dad I fall the hell out literal. If any one wants to know a BITCH, he or she is within us.

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