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Why I’m Viewing My Lupus Diagnosis as a Brand New Start to Life

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I’ve always been driven.

Always been determined.

Always been fiercely independent, full of desire for a life with purpose.

Until I wasn’t.

The first half of 2016 was easily the darkest part of my life to date: I started to struggle with stress and, at times, my mental health. I felt constantly tired and physically exhausted. Even after sleeping more than 12 hours a day, I would still wake up tired for no apparent reason. The day I was admitted to the Emergency Department, I had gained 12 kgs (26.5 pounds) of fluid in the space of about three weeks – and for the life of me, I couldn’t figure out how or why.

At 20 years old, I was diagnosed with Stage IV lupus nephritis.

Ironically enough, my diagnosis came not only in the middle of May (Lupus Awareness Month), but my hospitalization took place over Kidney Health Week as well. For anyone who doesn’t know, lupus nephritis is a type of systemic lupus erythematosus (SLE) situated in the kidneys; hence the irony of its timing!

I have to admit that up until the weekend before I was admitted into the ED, I had never even heard of the condition. And even then, as one after another doctor came in to look over me — each announcing that due to the swelling/fluid retention and classic red “wolf” rash across my nose and cheeks, their initial thought was lupus — I had no idea what that might entail or how it might affect my life and future.

The truth is, even a month after being discharged, I’m learning something new every day about this autoimmune condition called lupus. While I’ve read many articles on The Mighty about others who are also living with it, there is only one thing that remains true for each and every one of us:

No two cases of lupus are ever the same.

The hardest thing about explaining my condition to someone is that they may know someone else with lupus and have an idea of what lupus is like for that individual, or even have an idea of what the condition is like in a general sense. However, these ideas are rarely ever close to how lupus affects me.

And for me, it was a brand new start to life.

According to the final diagnosis, even though my condition was incredibly acute, I had been extremely fortunate in that the chronicity was pretty much nonexistent.

While I don’t specifically identify as any one religion, I’m a huge believer in signs, and this one was the kind you would’ve seen on Broadway — neon lights, blinking lights, spotlights — the absolute works!

With no disrespect to anyone else living with lupus, I have to say that my diagnosis was the most life-altering yet best thing to ever happen to me — which to anyone else seems absolutely confusing.

But after unknowingly spending at least a month living with it at the height of its acuteness (prior to being admitted to hospital) and feeling both helpless and hopeless as it slowly began to sap my energy, affect my state of mind and wipe the normally ever-present, eye-crinkling smile off my face… having the opportunity to confront that darkness, look that demon in the face and believe there was a reason for it all was the most pivotal moment of my life.

I know my case with lupus is very unique, that in the grand scheme of things I’ve managed to somehow — if it’s even possible — “win the lupus lottery.” However, I also know this could change at any time in the future, whether that be near or far.

I know this is only the beginning. Regardless of how good things look right now, there is no cure for lupus and the reality is, like everyone else with SLE, I will live with this for the rest of my life.

I’m not going to pretend like life is as easy or convenient as it used to be. Since the lupus is situated within my kidneys, making it almost equivalent to living with a mild kidney problem, this means a low potassium and low sodium diet is essential — though not the easiest diet to cater to. Avoiding potassium means food staples like potatoes, tomatoes and even something as common as orange juice are generally off limits. Plus, sodium can be — and, as I’m learning, often is — in almost everything!

I won’t ever pretend to understand the struggles of any other person living with lupus, but I’ve felt what it’s like for your body to be slowly overtaken by something unknown, and I absolutely refuse to let lupus dictate who I am as a person.

Life is what you choose to make of it and I am certain of only two things:

1. I have lupus, and it will be my cross to bear until the day I die.

2. I’m a fighter and I will continue to live my life — measuring it not by what I’m incapable of because of my lupus, but by every moment I stand tall because I didn’t let it define me.

“You have three choices: you can let it define you, let it destroy you or let it strengthen you.”

It may only be the beginning, but I’ve made my choice — and I know I’m already stronger.

Originally published: August 5, 2016
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