A Letter to the Body I Hate Because of My Chronic Illness

Dear Body, the blobby piece of flesh I call home,

It makes me feel super “crazy” talking to my body as if it isn’t part of me — as if I am detached from myself. I suppose sometimes I am.

Chronic illness is hard to come to terms with. After six and half long years, I’ve started to think about how I use the hate I feel towards my body and my health to distance myself from my condition.

My body is the weakness, not me. I am 23 years old living in the era of body positivity and hashtags of #hotgirlsummer, and I am very much here for the reclaiming of our bodies from the male gaze. This gives me a conundrum, then. How can I run on about loving our bodies and not being ashamed of our individual differences when I don’t see you as part of me? When I feel constantly let down by what you put me through and at times, I can really hate you.

Being diagnosed with nephrotic syndrome at 17 changed my whole world. Overnight, I went from worrying about fall outs with friends and making sure I had the latest Topshop jeans to weighing the pros and cons of certain treatments and medications. It was the changes to you that started to pinpoint the health issue — all the water weight I started to have to carry around with me, the puffy eyes and the blood when I was peeing. I was convinced I had just gotten fat at the time, too many double decker’s from the college canteen. I thought I really needed to focus on how I could shed weight quickly and easily.

It was when my clothes started to get tight in a matter of days that I knew you were changing in a way I was going to hate. I was convinced I had managed to shrink all my clothes in the wash, that buying loads of new baggy tops and leggings was a style choice and not a necessity.

I had my first date with my now boyfriend back then and I didn’t want him to see what you had become. I went to the cinema covered in layers of material that were unneeded for June. Soon, I was wearing my dad’s socks to go to endless doctor’s appointments, exposing my nonexistent ankle bones to nurses and rolling down my leggings to show my bloated white stomach that moved like a water bed.

“Are you sure you are not pregnant,” they asked?

It always made me giggle. If I hated you, how could anyone else love you? Why would anyone come near me?

See, my major problem is, Why do you attack yourself? This isn’t caused by any horrible viruses you’ve caught. You haven’t been invaded, you are inflicting this on yourself. Autoimmune disease, right? So you are trying to protect yourself by waging war upon yourself? How could I ever make sense of that?

I’m angry at you every time you bring this back — every time I relapse. Every time you turn into something I don’t recognize — pale, bulging skin so full of water it looks like it can’t take anymore.

The fact is, I don’t know whether to feel sorry for you and the fact you have to put up with forever changing. I’ve put you through so much and for that, I am truly sorry. All the destructive treatments that have killed off parts of you, the times I’ve caused you to collapse during a panic attack and even the times I haven’t recognized you because of the side effects of medication. The girl in all my photos with steroid moon face looks lovely, but she isn’t me.

At 19, you were covered in the worst scars my consultant thought he had ever seen from swelling and steroids. My stretch marks covered my thigh and legs, reaching around my hips like two giant hands I couldn’t escape from. They are part of me now, the skin that’s so thin and worn you can almost see through it. I thought this was the worst thing you could have done to me.

When the jibes came during the summer about the ugliness of my scars, I thought my world was ending. People could tell me until I was blue in the face that they were my battle scars and something to be proud of. I didn’t see anything to be proud of. You had let me down after all, my battle was far from won. Celebrating seemed a long off.

When I think about it, you are not all bad I suppose. There are some things I like about you. I mean, we have been through a lot together and even when you’re worn out and every part of you aches, I guess all the ink I’ve covered you in looks pretty cool. I mean, I do really like how long my legs are and you did bless me in the boob department. Most of all, you have never given up on me, no matter how much shit I’ve put you through. I hate to say it, but I don’t think these treatments are going to get any easier.

Most of all, I’m sorry for not looking after you. I should listen to you more. I’m so determined to keep fighting that I don’t listen when you are screaming at me to stay in bed, or to not do the stupid thing I’ve decided to do this time. I can’t promise to love you every time I look in the mirror, but I haven’t given up on you just yet.