As someone who has been broken up with because he “can’t handle my disease.” As someone whose future mother-in-law asked her future husband why he couldn’t find someone who wasn’t sick or broken. As someone whose boyfriend asked her when she was going to “give up the idea of having RA.” As someone who get looks of worry or words of concern when I choose to carry something heavy, (or has it taken away from me because they think it’s too heavy). This post speaks to me: I Promise To Love You When You’re Sick.
My disease does not define me, but it does frustrate me. I can physically do most of the things that I want to do, but not all. And some of them I cannot do for an extended period of time. I work with my doctor, my drugs, my food, my body, my family – to do the best that I can for myself. But on some days, it just isn’t enough. On some days, I just want to scream and cry and throw things, but on those days, I’m often too tired, or it hurts too much.
A long time ago, I came to hate the word fragile. I am not fragile, I insisted, I’m just a little broken, and some days a lot broken. And anyone who has seen me play, or read some of my more physical scene descriptions, can attest to that. I am not fragile. I refuse to be. You cannot straighten your left leg or your right arm, they’d say – I’m going to learn Fencing, I replied. Every joint in your body is screaming, they said – I’m a Masochist, I insisted. I’ve seen your body try to kill you, he said – I’m going to fly, I replied.
Diseases like this are a rollercoaster. I’ve had periods of remission – when I felt almost normal. But normal to me is a lot different than normal to a healthy person. I have spent a couple years off drugs here and there. Most recently when eating a far healthier, far more limited diet. But even then, I wasn’t pain and flare free, and I’d rather be happier than totally drug-free at this point in my life. And chocolate makes me very happy. 😉
So, to all of those in my life, who do their best to understand, to support, and to comfort me. To all of those who love me without thought of my disease, or with every thought of my disease. To the (ex)husband who told his mother to leave off. To the (ex)boyfriend who taught me about healthy eating, but did not shut me out when I started taking drugs again. To my boyfriend who lets me carry anything I choose to carry, and makes sure that he or others are there to carry what I choose not to try, who has never treated me as fragile, but understands that I am sometimes more broken than I want to admit. To all of those who in my life who are suffering alike or differently. Thank you for being party of my life, for loving me. I love you, too.
I love you too.