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The Telltale Signs of Lupus You'll Notice If You Look at My Bedroom

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The thing about living with an invisible illness is that upon first glance, to the naked eye, you wouldn’t believe I have it. But let me open up my world to you and take you on a tour. You might not notice it at first, but if you look closely there are telltale signs of how lupus has changed my world and who I am, for better and for worse.

Lupus is difficult for people to understand because it’s not something that can be easily imagined. Many people believe if you have something debilitating it must be visible. Though it’s not obvious to start with, there are many things that make lupus visible; you just need to look in the right places.

You won’t notice it at first, but when you enter my room, lupus is evident everywhere. There are cork boards full of smiling faces, photo after photo of amazing memories and the people I hold closest to my heart. But they’re all wrong. None of my pictures are all that recent, and it’s not by accident, but by design.

I love to remember holidays and adventures, the days I spend with my friends and my sisters. I do so through photos. But I don’t have very many from the last year.

If you scroll through the photos on my phone there is a big gap between June and November, and the reason is simple: Prednisolone. I couldn’t stand my appearance, how much weight I gained and how it made my clothes so ill-fitting. Though I wasn’t aware of it at the time, it definitely took its toll.

Look a little further and you’ll find a small whiteboard stuck with appointment cards for blood tests and doctors’ visits, and markings urgently reminding me to fill prescriptions, as I’m so terribly prone to forgetting.

Glancing at my bedside table you’ll find worksheets on mindfulness and a blue journal filled with my erratic and ever-changing script. I keep them close by for my late-night wanderings, when sleep doesn’t come easily and anxiety tries to claim me.

A quick peak in the cube-like cupboards in the corner of my room will uncover a compartment especially for medication and, while it might look like enough for a family, a glimpse at the labels will confirm it’s all specified for me.

There’s chocolate on my desk that’s barely been touched and is starting to discolour from the rapidly-changing weather. It’s not that I don’t like chocolate, but I’m not allowed to have it often. So, I keep my favorite type for special occasions or when I start to feel truly blue.

When I reach for something in the top of my cupboard you might see a mole-like scar on my back, from the kidney biopsy that confirmed my diagnosis. And if I turn to look at you, the sunlight from my window will show you the wolf rash across my nose and cheeks, as I’m an ocean and beach lover to the core and I can’t keep myself out of the sun, as I should.

Finally you might ask about the one thing that makes my lupus obvious, the tattoo inside my left arm, and of all the things I’ve mentioned it’ll be the easiest for me to talk about.

My eyes will scan the smiling photos of myself pre-May 2016, looking for the girl I used to be and thinking of how different the two of us are. But then I’ll turn to you and smile that genuine crinkly-eyed smile I’m known for, as I talk about my journey with lupus and how the little wolf I carry beside my heart is my ever-present reminder. A reminder of my own inner strength, a reminder of my perseverance in every face of adversity that’s come my way, and a reminder that no matter how much my life has changed and will change, I’ve got this!

Although it has few tangible symptoms, lupus is still very visible throughout my life, if only you take a closer look.

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

Originally published: February 9, 2017
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