Dear Lupus,

I hate to admit it but, you’re smart. You play hide and seek tremendously well, nobody believes me when I tell them I’m sick, you can even hide yourself when I have my blood tested. But, I have to ask, do you hide because you’re a coward? Or is hiding fun for you? Is this a game to you? Because, to me it’s not a game, it’s my life.

Why did you choose me? Did I do something wrong? You should of introduced yourself gradually, that way, I would have stood a chance at understanding you. For months, I was left confused, angry and upset at what was happening to me. I don’t frighten easily but you frightened me, all because you wanted a head start and introduced yourself too quickly. But, you like that don’t you? You like me to be frightened of you. It’s been two years, have you figured out that I’m no longer frightened?

It isn’t me that is causing the chaos, it isn’t me that declines invites and it isn’t me who cancels plans. I didn’t want to attend occupational health appointments, I didn’t want to be medically resigned from my job at the age of 21. I didn’t want to sit across from a nurse and answer questions, did you know my answers were scored? I was scored so they could see how sick I am, which is difficult to prove because you hide. Don’t you see? I’m judged daily by people who barley know me and by those who are meant to be close to me. Judged by people for YOUR actions. You think you make me look weak, but let me give you an analogy: you hide whilst I’m showing my face, smiling through the pain you cause, smiling when I know fine well I’m being judged. There’s not one person on this earth who can see you. Although I can’t see you, everyday I feel you because you demand to be felt.

What gives you the right to hurt people? Not only do you hurt people physically but you destroy them mentally. What’s enjoyable about reducing someone to tears because they can’t take the pain you cause for much longer? You make people feel useless, worthless and a burden to their loved ones. I can safely say, I have felt all three of those emotions. You have caused me so much pain and emotional discomfort that I’ve been curled into a tight ball on the floor and sobbed my heart out. It’s not just me you hurt, you hurt my loved ones, do you think they enjoy watching me walk around in a permanently exhausted state? Do you think they enjoy watching me suffer in pain? They don’t, and part of me dies when I see and hear the worry on their faces and in their voices. It leaves me feeling guilt ridden, guilt ridden for something beyond my control, guilt ridden for you because you feel no guilt.

They tell people you’re unpredictable, and for the most part you are. But, everyday for the last two years, I wake up and expect pain. And everyday for the last two years, I have received the pain I had expected. Sometimes I can bear the pain you cause but sometimes I think you’re too strong for me to fight and I start to believe this is a battle I have no chance at winning. But, that is a temporary thought because I’m playing you at your own game and I will only let you win for so long.

What exactly is your plan? It’s clear to me that so far this has been child’s play and you can and will do worse. The doctors and researchers tell me that death by you isn’t common anymore. But, that’s not to say you won’t try, will you eventually grow bored of me and give it all your might and end it? Because I will fight back with every fibre of my being. I’m too stubborn to go down without a fight. Did you really think I wouldn’t research you? From day one I’ve known you have the power to kill me and I even know how you’ll possibly do it. Do you know how that feels? To have a need to read up on things like that? The first few times I attempted to read about you, I stopped each time death was mentioned. It was tormenting.

Thank you, yes, I just thanked you. Because you have taught me many lessons, one being that you must find the positives in every situation no matter how tough and devastating those situations are. I have found a world of incredible people, people who battle you and other debilitating illnesses everyday. I have gained an eye that can see pain that isn’t visible to the majority of people, I have gained a level of empathy most people couldn’t fathom. I have realised it’s not the things we own that matter, it’s the people around us. I have gained strength and I carry hope with me everyday and I will never let it go. It’s likely I wouldn’t learnt these things without you, but these are things you can’t take from me.

I’d love nothing more than for you to leave, but you’re here to stay. Whatever you try and however hard you try, always remember that this is my body and my life. I’m done with you taking things away from me and no matter how much pain and devastation you cause: I will not give you the satisfaction of giving up.

Regretfully,

Emily Holling.

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4 thoughts on “Dear Lupus,

  1. Nice. I completely understand those feelings. It’s amazing when you realize there are other people that feel the exact same way. Never give up…I refuse to let Lupus win. ☺❤

    Liked by 1 person

  2. Every time I read about stuff on the medical websites it makes me cry as well. I feel there is no way at times to be postive, but the amount we have been through we are the strongest. Your posts always make me happier knowing someone is on my side!

    Liked by 1 person

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