A Letter to My Lupus on the 1st Anniversary of My Diagnosis

I’ve got to hand it to you. You’re good at what you do. If your aim was to turn my life upside down and alter it beyond repair, then congratulations –you did it. You’ve worked hard to change me and it’s paid off. There’s very little trace of the girl I used to be. But we both know it hasn’t all gone according to your plan, and that puts a beaming smile on my face.

At first, you were sneaky. I couldn’t even tell you were there, and I’ll admit your patience was impressive. Had you hit me all at once, it would’ve been too obvious and too easy for me to stop you in your tracks. So you waited, only interjecting here and there, or whenever I was off guard.

And you were smart, you played right into my pride. I knew something was wrong, but never considered it could be anything serious. By the time someone was able to convince me of the severity, you had set up camp long ago and were here to stay.

The 22nd of May marks our first anniversary. It will be 12 months since we were officially introduced, and while it’s a day that I’ll remember forever, forgive me if I don’t feel like celebrating.

I hate you in so many ways and for so many reasons.

I hate that you have the power to reduce me to tears over the smallest of things. You know exactly which button to push and when, and before I know it I’m an anxious and emotional wreck once again.

I hate that your only focus is to destroy me, anytime and anyway you can. You’re not fussy – you’ll do it physically or mentally, whatever works best. It kills me to know that you’ll always be there, waiting for the perfect opportunity to pounce when I’m weak.

And most of all I hate how much you’ve stolen from me. How it feels like I don’t have the freedom of anyone else my age, like I’ve been forced not only to grow up but also to face my mortality at such a young age.

The more I learn about you, the more it scares me and the harder it is to put on a brave face. I’m upset because I never thought infertility would be a worry in my early twenties. Pregnancy wasn’t something I had intended to think about for the better part of a decade – and you’ve got me frightened.

I’m frightened because having kids of my own was always part of my big-picture plan. However, between you and the immunosuppressants I have to take religiously, even if I’m not infertile, I’ll never go a day without being crippled with worry. I worry that DNA and personality traits aren’t all that’ll get passed on to my innocent children, but you as well.

Looking back on these 12 months it would be easy to focus on all the ways that you’ve hurt me, but instead, I’ll put emphasis on how I’ve hit back. I have refused to stay down, no matter what you threw at me.

I guess I should really thank you, because I’m twice the person I ever was before we met. At times you have broken me, but it never destroyed me. In the long run, it only made me that much better. I grow stronger every day that I’m forced to spend with you by my side, and with every waking moment, I remember that I am so much bigger than you.

You make no promises, other than to continue to walk this journey with me, all the way into forever. But I want to make a few promises to you. I promise that no matter how hard you hit and knock me down, I’ll always get back up to fight again. I promise to make you famous, to tell the world about you and exactly how you affect my life and the lives of millions. And I promise that when the time comes and this battle ends, I’ll leave wearing that crinkly-eyed smile I’m known for, because this was my life and never for one second did it ever belong to you.

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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.