A Letter To My Disease

Dear Rheumatoid Disease,

This letter has been a long time coming. I’ve wanted to write for so long, but there were things stopping me. It’s not just that I couldn’t find the right words, or that I was compiling my thoughts and that took time. If it was just that I could have written one letter, and then another, and then another, until everything that needed to be said was on paper. It’s that I’ve been so lost, I haven’t wanted to write at all. Not my blog, not my journal, in fact the only thing I have been doing is coloring. That didn’t need words, or emotions. I could sit there for hours with my books and pencils, watching the colors, deciding what they meant to me, what they represented on that paper, and in my life. Zoning out, hour after hour, day after day. Colors.


Sometimes though, the colors aren’t enough, and they can’t take the pain from my mind, they can’t save me from you. I often fantasize what I would say if you were standing right in front of me. If you could be a physical being, what I would say to make you listen. What I would do to you to make to feel what you have done to me. Would I hit you? Would I scream and shout? Or would I be vengeful? Would I do to you what you’ve done to me?

If you were a person for a day I’d make you be me. A taste of your own destruction. I’d make you feel the pain of getting up in the morning knowing that there is no cure for what you have done. Make you feel the humiliation of not being able to open a carton of milk, like you used to be able to do not three years ago. I wonder if you wanted me to feel small and insignificant on purpose, if that was part of your game. I’d make you then bathe, and cry out in pain and shame when you couldn’t squeeze the shampoo bottle, or lift your hands to your head to lather in the bar of soap you were forced to use instead. I wonder if you even care how hard you have made my once simple life. Would you understand my anger when you couldn’t get dressed without screaming, or pull items from the fridge to feed yourself? Or would you laugh at me, at yourself, because this was your design, and what you wanted. Would you smile at the people on the street that will never understand my pain, will you feel happy that your work was a success?

Some days I stand looking in the mirror, hoping to talk to you. Hoping to ask you why, why did you choose me? Was it my body, was it an experiment? Was my body more resilient than others, were you hoping to see something different in me? How did you come to this choice, this body, this severity? And how much longer are you staying? Months? Years? Are you planning to die with me? Or maybe when I go you just move to someone else, another body for you to destroy piece by piece.


I wonder…. If I begged, if I pleaded with you to stop… could you? Would you? If I cried for you, showed you how much I don’t want to die… Maybe then you would ease up?


No of course you wouldn’t. I see your smile every time one of my bones cracks. I see your joy in the swelling of my joints, and the discoloration of my skin. I feel your content when I can’t find clothes that fit due to my growing body, a side effect of a drug that barely touches you, but causes me great discomfort and shame. What will it take to bring your smugness down? What can I do to destroy you like you’ve destroyed me? Maybe the only way is when this ends, when I take you down kicking and screaming. When you’ve broken everything and all that’s left is the long sleep.

I always sit and wonder what to say to you. How to make you see how wrong you’ve been, how unfair. Why did you do this to me. What are your goals in all of this? If it’s to ruin me, you’re done, you can stop. My bones are brittle like English toffee, my blood poisoned with you, my body exhausted and worn. Every inch of my flesh is crying. Is that enough for you? Have you had enough yet? How much more can I give, how much more do you want?


I’m tired. Please, please, please let my body go. Find another. I wont be much entertainment soon. My body is falling apart. Find another. Please. Please. Please.





***If you would like to help me financially/medically please visit my page and make a donation: Christine Lilley’s Life Fund

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