Navigating Body Image with a Chronic Illness
I thought this would be easier to write. I thought that I had all of my feelings figured out about how I feel about my body and the chronic illness that resides within it. But each statement I wrote revealed another layer to address, something new and somehow more confusing than before. So I still don’t have all of my feelings figured out. But I still want to share my experience, in the hopes that writing to you will help clear everything up, maybe for me and maybe for you.
My chronic illness still does not have a name. It is hard to fix something, and so easy to be mad at something, that does not have a name. There is no path to follow when you don’t know what is hurting you. It is so much guessing and trying new things and too many doctor’s appointments and not enough answers. I have never liked guessing games. It always stresses me out how long it might take me to guess before I can get the right answer. And now my body is this big guessing game that feels never-ending.
My illness, whatever it is, causes me to get sick almost every time I eat. And it has for months. This meant entirely changing my diet and tiptoeing around every meal for fear of the nausea that was bound to hit me. So my meals became bland. Boring. And small. I am someone who gets excited to eat. But it got tough to get excited about oatmeal for the fourth day in a row. I was scared to eat. And then I just wasn’t eating that much. And my body got smaller.
I have never been someone who has fully loved their body. But I learned to love her through how I dressed. I spent a lot of time thrifting for clothes that made me feel good about my body, things that made me feel me, and therefore more at home with myself. Thrifting for me often means disregarding sizing of clothing and buying pants sizes too big to get the look that I want. Part of me loved not knowing how my body was changing in terms of clothing sizes, it gave me a freedom of being assigned to a number, and therefore freedom of overanalyzing anytime that number would potentially change.
So I got sicker and smaller. And unfortunately doctors appointments mean scales, meaning I could no longer avoid the numbers. Or avoid my changing body. At first I didn’t notice a change really. But soon, every interaction with a family member or friend started to begin with, “You look so tiny.” And then every time I looked in the mirror after each comment, I saw tiny. I saw a skeleton. I saw the sickest girl. And I did not feel pretty.
The worst part about the comments, though, was that they often were given as compliments. So even though I did not feel pretty when I looked in the mirror, they saw pretty. And I have found myself afraid to gain weight back that I had wanted to gain back. I want to be me again. I want to be healthy. Yet, I know my brain will fight with me when the time comes; I know it will say that I will not be as pretty. It’s been hard to talk about hating being small without getting comments saying I am lucky, saying I should be grateful I can lose weight so easily. But I didn’t do this. My body did this to me. So I do not feel like an instigator. I feel like a victim of my own body.
So now I am stuck, navigating my sick body and my sick brain and the sick truth that I am fed by other people on the daily that smaller somehow means better. But I am smaller and it is worse. So many people view the size of someone's body as a measure of how healthy they are. But here I am, how the world wants me to be, and I am the furthest from healthy I have ever been. I am small but I am sick. I am small but I am exhausted. I am small but I am so lost. It feels as if my whole life revolves around this small body. I am existing to keep her alive rather than to live in her.
I still do not have answers about my chronic illness. It is still something that scares me. And my body scares me. I often wonder if I will ever truly be back to me again and carry the confidence I used to hold and the home that I had once found in my body. What a fun resolution, right? The scariest of all of it is the uncertainty. Everything is unknown and I am stuck playing the longest guessing game that might never have an end.
I feel some sort of comfort to know that there are a lot of people out there in the same position as me, lost and uncertain. To talk with them is the most validating thing. To finally be understood how I need to be. Not for me to complain and have a doctor try to throw a test at, but for someone to just hear me. It feels like a new type of strength: to feel known, heard, and understood.
I am still angry. I am still scared. And I will never stop being confused. But I take comfort that there are people out there who listen. So I am going to continue to say as much as I can, whether that means journaling or complaining to my sisters. Or, writing to you. Because maybe the more I say, the less confusing it will become.
About the Author
Molly Burki (she/her) is a junior at the University of Wisconsin-Madison studying Textiles and Fashion Design. In her textile work she focuses on creating pieces that evoke feelings of comfort and familiarity for the purpose of making a safe space for vulnerability. Hoping to create a similar feeling through her writing, Molly uses her voice to speak out about mental illness and navigating queer experiences. In her free time, Molly can be found drinking too much tea and complaining about how astrology memes always get Virgos wrong.
