When I was first diagnosed with severe Crohn’s Disease, I was extremely ashamed of my diagnosis and did everything in my power to hide it from strangers, acquaintances, & even friends or family members. This is because chronic illness, particularly an IBD, has a lot of stigma in society. They’re not talked about, and there are few public figures (if any) who are open about their struggles with Crohn’s/colitis/other forms of IBD.
It took two full years of struggling with myself to be completely & unapologetically open about what conditions I have. I would now consider myself a chronic illness advocate. I try to be the girl I wish I’d seen when I was first diagnosed: someone who, although is open about her chronic illness(es) also shares her other interests, whatever they may be. Someone who is chronically ill, yes, but also a young woman, an artist/musician/student/doctor/etc. That’s what I’m trying to do for chronically ill young women now.
I have found a lot of young women & girls on the internet who relate to me just as much as I relate to them. I try to create a community for all of us to share problems, jokes, & stories.
I also find people on the internet who have no idea what my illness is—and that’s okay. I want to tell them about it, so that they can be more aware. Crohn’s Disease affects as many as 1.6 million Americans, according to the Crohn’s & Colitis Foundation, but until I was diagnosed with the condition, I had absolutely no idea what Crohn’s Disease was. I hadn’t even heard the words. They meant nothing to me. Now, I want to educate those who aren’t affected by the disease themselves, while also making myself a relatable figure for other chronically ill girls who aren’t as comfortable being open with their illnesses (& that’s okay!!).
Of course, I still struggle with my own body image issues—what young woman doesn’t, after all? Body image issues are particularly rampant among chronically ill girls & young women, who often gain/lose weight due to various medications or symptoms, may not be able to walk “normally,” or need to rely on some sort of aid, such as a chair or cane—and so on. In my case, I struggle to gain & maintain weight. I am at an unsafe weight & an unsafe BMI. I know it, my doctor knows it, my family knows it, my friends know it—and all my social media followers know it. I have as of late been extraordinarily open about my body image issues, my struggle to gain weight, my eternal flip-flopping between getting admitted for TPN or not, & so on & so on. I have gotten amazing support from family, friends, & strangers on the internet who have been through similar situations. I appreciate every single one of them.
However, I get a lot of commentary about my weight on the internet. It doesn’t offend me, per say—but it disturbs me. Sometimes I’ll get anonymous messages like: “You look anorexic.” “You have bulimia, don’t you?” or the classic: “Skinny bitch.” Well, I am neither anorexic nor bulimic. However—those shouldn’t be used as insults. Anorexia & bulimia are serious, life-threatening illnesses that affect the body & the mind—& are not to be sneezed at. As for being a skinny bitch—I am skinny, & I never deny that! Messages like that make me laugh. I know I’m skinny! I know I’m underweight! People like that are just being hateful. They’re trying to make me hate the body that I am in. I refuse to let them do that to me.
I am conscious of my weight (or lack thereof). However, I no longer slouch into big sweatshirts and try to make myself smaller. I will wear a crop top when I want. I post a picture of myself in a bikini. When I feel good about myself, sometimes I let the internet know. Sometimes I don’t. But I refuse to let strangers take away the love that I still have for my body, despite all the hell it has taken me through.
Is this groundbreaking? No, probably not. I am a white, young woman who is very thin. If I were taller, I could perhaps categorize as a runway model (which leads into another discussion about how most runway models are so clearly underweight). However, it is the fact that I am chronically ill, & that I am this thin because of my illness(es) that makes it a topic that I believe should be further shared & discussed.
Just the other day, it was 85 degrees out. I found my cute American Apparel bikini from two years ago in the back of my closet. I asked my sister to take a picture of me laying on our driveway, with my sunglasses on, pretending I was on a beach (she kindly obliged). I posted it without a thought.
A few hours later, I got this comment:
It’s a comment I see over, & over, & over again on any of my photographs that expose my stomach, legs, or full body.
I know it’s meant kindly. That’s why I never lash out. I recognize that my underweight body is a part of societies screwed up idea of what a woman should look like. That is wrong. As you can see in my comment, I am far from healthy—partly because of my Crohn’s Disease, but also because of my extremely low weight & medications.
However, it makes me uncomfortable when someone comments: “I wish I were you” or “Goals!” on a picture of my body. Again—I know it’s meant to be a compliment, but I’d much rather “you look beautiful,” “what a lovely photograph!” or even “love the swimsuit!”
When you tell me that you wish my body was yours, I immediately think of the countless hospitalizations; the infusions; the chemo pills that make me sick to my stomach; the fact that the inflammation in my body from my Crohn’s Disease has led to me developing inflammatory arthritis in my hands, feet, & knees; the fact that I am facing a possible surgery in the next month; the fact that I may live a shorter life because of these things.
This, of course, won’t stop me from posting more pictures of my body. When I feel cute, I know it. When I feel sexy, I know it. I have bad body days, too. That’s okay. But I won’t let comments on the internet dictate what or when I post. I’m here to educate people who are not chronically ill, & (hopefully) be someone that other chronically young women can look up to.
Goal of this?
Next time you see a woman or girl who has a body you’re envious of, try to refrain from saying you wish you looked like her, or that you wish that you were her—especially if she is chronically ill (& open about it). You never know what someone is going through, and there are so many ways in which women can support one another! Wishing we were someone else isn’t one of them. Next time, when you’re scrolling through Instagram, stick to the heart eye emoji when you comment on her bikini picture.