Why I’ll Be Unapologetically Vocal About My Life With Lupus


Some might be ashamed of their status as someone with chronic illness; however, I’m not. I wouldn’t say I’m proud of it, but it’s also not something I’ll ever work to hide from the world. In fact, I’ll endeavor to share it as much as possible.

Worldwide, millions of people are diagnosed with lupus, yet there’s still such a large majority who have never even heard of it. I understand not everyone wants to voice their struggle with lupus. For some people, the “invisible” part of their invisible illness keeps it hidden from the world – exactly how they’d like to keep it. But I’m not one of those people.

 

Imagine if every person with a chronic illness was unapologetically vocal about their struggle. How much more awareness would there be? How much less stigma would surround us? How many of us would benefit from the world understanding just that little bit more about us?

The thing is, I know not everybody wants to hear about lupus and some people are going to get sick and tired of listening to what I have to say. Respectfully, I don’t care. I don’t write or share photos for those people. I write columns and post photos for myself and all the other people in the lupus and chronic illness communities. And every time I push past that feeling of second-guessing myself, I know there’s every chance my daring has helped educate one more person, even just that little bit more.

I want to help break down the stigma that surrounds illness. I want others to feel less alienated by their illnesses and more empowered by the support and knowledge of the people around them. I want to share my experiences with the world, in the hope that even one person somewhere in this big, bad world feels more understood.

The generally accepted idea is if you’re diagnosed with something, you need to keep it to yourself and endure it in silence, but I can’t understand that way of thinking.

Lupus was not silent as it slowly attacked my kidneys, temporarily impairing their function and causing me to retain fluid. It is not silent as it continuously plays with my blood pressure, my sleeping patterns and my energy levels. And it’s definitely not silent as it threatens to derail my life at any given chance, forcing me to constantly reevaluate and redirect.

Lupus will never stay silent, so why should I?

I don’t believe I was given lupus for a reason, as I did nothing to deserve it. But every day, I get up and choose to make lemonade out of the sour fruit life gave me.

I won’t force you to listen, but I’ll ask you to. There’s an entire community of people out there, and we’d love if you’d take the opportunity to be educated — even if it’s just for a single fleeting moment.

Even though I’m young, I’m committed to awareness because it’ll benefit me just as much as someone who’s older. Personally, my struggle is getting people to understand that although I’m part of the working-class age category and appear to be fit and healthy, there’s a lot more to me than meets the eye – and I don’t just mean personality-wise.

I want the cashier at the pharmacy to be less surprised when she asks who the bagful of medication is for, and I answer it’s all mine. I want to not have to be downhearted and ashamed when I can’t make it to a lecture or the gym because I’m just too tired. But most of all, I want to be able to talk about my condition as if I were discussing a sprained ankle or the common cold. I want to normalize chronic illness within the wider community.

Maybe I don’t have a loud mouth, but I’ve got a big voice and I’m committed to a message very close to my heart (and kidneys!). So, I hope you’re ready for what I have to say!

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

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Thinkstock photo via bruniewska.

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