Starting A New Chapter: Lupus

Editor’s Note: Kristiana Page is the latest columnist to join the Lupus News Today team. In her new column, entitled, “The Girl Who Cried Wolf,” she explores a wide range of topics that hit home for Lupus patients. Her first post talks about her diagnosis as well as her commitment to never letting Lupus define her.

It’s a funny thing to be in your early 20s with an autoimmune disease. No one expects it. The assumption is that if you’re young and appear to be fit, healthy and happy, it’s not possible for you to have an awful, life-affecting condition.

But it is — and I do.

I am Kristiana Page, a 20-year-old Australian surfer, barista and university student. I have Stage 4 lupus nephritis.

I’ve always been a fighter. Applying my family’s motto “never give up” to all aspects of my life, there was never a situation I didn’t believe I couldn’t ultimately and completely conquer — until they diagnosed me with lupus three months ago.

While there are a lot of unknowns in relation to my new companion lupus, there are two things of which they are certain: They don’t know what causes it and there is no complete cure.

Translation: I will live with this for the rest of my life.

I remember the day I was admitted to the emergency room and doctor after doctor came in to assess me, trying to work out what was wrong. To paint you a picture: I had put on 26 pounds of fluid and gone up two jean sizes in the space of about three weeks. As a whole, at least mentally, my world felt like it was not only crumbling, but crashing before my very eyes as I watched, completely helpless.

At the time, I was oblivious to the fact that the doctors kept coming back to the spots and rash on my face. I did not understand that those tell-tale signs would mark the start of a new chapter of my life.

For anyone unfamiliar with lupus, common symptoms of systemic lupus erythematous (SLE) include skin lesions and a red “butterfly-shaped” rash that spreads across the nose and cheeks.

You may have heard lupus referred to as the werewolf, or wolf disease. That term stems from two reasons: The photosensitive red rash often gives someone with lupus a wolf-like appearance, and in early France many claimed that the skin lesions looked similar to that of a wolf scratch or bite.

I’ve included “wolf” in the name of my column for two reasons.

First, I can’t deny my love of a good play on words, but more than that I’m a huge believer in creating meaning and symbols. When I was first diagnosed I made all kinds of promises to myself not knowing if I’d actually be able to keep any of them.

I promised myself that I wouldn’t let it get to me. That I would always do my best to stay strong, no matter how hard it tried to knock me down.

I promised myself that no matter how many heavyweight terms and phrases — like “long-term chronic illness,” “immunosuppressants,” or “remission” — were thrown my way, that lupus would never define who I was, who I am, or who I will be.

But, more than anything else, I promised myself that regardless of how quickly my lupus should progress, even in the short-term, and no matter how much it restricted what I could eat, how badly it made my joints ache, or how often it stopped me from sleeping, I would never ever let it dictate my life — my life was mine and it would always belong to me.

I separate myself and my autoimmune disease by referring to my lupus as a “wolf” because, while it is part of my body, it is not who I am, and I’m determined to make sure it never will be.

Life has dealt me a hand that many may claim is more than unfair, but I won’t spend the next 40-plus years of my life sulking about what is unable to be changed. At this point, there is very little in my life that I have complete control over, but attitude and perspective are solely mine and I won’t give them up anytime soon.

I know I won’t make it through every day unaffected, and there will be moments where my usually ever-present smile is nowhere to be seen. But I’ll stand proud knowing that every time I could I looked that black wolf in the face and refused to give in.

I’m not backing down. I know this fight is mine and no matter how many times I fall, I will win this — just watch me.

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.