The ongoing battle I have with my body isn’t surprising. What’s surprising is that, underneath the issues that arise from living in a chronically ill body, I grapple with the same body image issues I’ve had since I was a child. Even at my sickest—when I was constantly on painkillers and a new surgery scar appeared on my skin every few months—I wasn’t immune to wishing I wore smaller jeans. I’m not proud of this. I wonder what it means to look back on my year of cancer survival and cringe at extra pounds.
The body positivity movement was formed in the 1960s by people in marginalized bodies to promote the radical acceptance of fat, disabled, Black, and queer bodies. The basic tenants included pushback against the white, patriarchal beauty standard and a fight against anti-fat bias. However, the movement was quickly painted terra cotta and commodified for the masses. Instead of being a space for marginalized people to radically accept themselves, it became a place for thin, conventionally attractive influencers to tell their followers that they felt less than. While these admissions might be helpful, they pushed many other folks—including disabled and chronically ill people—further into silence.
I’m not alone in this assessment. Neve Brown, a 21-year-old with endometriosis, has watched the body positivity movement shift from focusing on what a body looks like to emphasizing what it can do for you. She understands why that reframing is helpful for some people, but, as someone who deals with debilitating pain, it doesn’t buoy her. “My body just betrays me mostly,” she says. “What it’s doing for me is forcing me to lie on the bathroom floor in pain. I’m constantly battling my body no matter how much I try to take care of it.”
Additionally, Brown says there’s an emphasis on “acceptable” aesthetics, even as the movement tries to lean away from looks. After having a hysterectomy at 21, Brown’s stomach bears surgery scars. She says she sees photos of stomachs that look more like hers, but they often belong to pregnant people. The message for them is: It’s okay for your body to look like this because it was your baby’s home. But what about people whose bodies are scarred for other reasons?
When I talk to other chronically ill and disabled people, a word that often comes up is ‘betrayal.’ Many of us feel betrayed by our bodies. We feed them, let them rest, and give them ice packs and heat pads. We count out medication, and still, they don’t always perform the way we’d like. Chronic illness is the deepest betrayal of my life. I do everything I can to please my body, and it laughs.
And yet—I still fret about all the things I worried about before. Sometimes, I catch myself thinking: Not only does my body not look the way I want it to, but it doesn’t work the way it should. If I ever thought that being forever sick would somehow propel me into a more enlightened version of myself who doesn’t worry about numbers on a scale, then I was wrong. If anything, I am more attuned to the shape of my body now. I cannot control what my pain level will be on a given day, so the metrics on the MyFitnessPal app become a focus. In that way, body positivity isn’t a useful framework for me. It can feel like an additional layer of betrayal on top of the constant disappointment chronic illness brings. (I can hear my mom saying that my body is fighting for me. I respond: “I know, but I still mourn what I thought it would be.”)
Quincee Gideon, PsyD, a licensed psychologist who specializes in trauma and chronic illness, said that the body positivity movement often relies on ignoring discomfort. “When your body is literally betraying you and someone is telling you to feel differently about that, to feel positively, it’s like telling you to calm down when you’re upset,” she says. “It’s just a denial of where the person is. Some people are living in a body that’s uncomfortable at times and to feel positively about that is to ask them to live in a cognitively dissonant space.”
I don’t think I’ll ever get to a place of body positivity, but I do think there’s a chance I could reach body neutrality. Body neutrality is a movement based on the idea that you don’t have to love your body, or even think about it that much, to be able to appreciate what it does for you. And sometimes, I am so proud of what my body has done. It carried me through four major surgeries, multiple rounds of radiation, and thousands of hours of excruciating pain.
But there’s also a part of body neutrality that doesn’t open its arms to chronically ill and disabled people. Body neutrality says you don’t have to think about your body, but anyone in a sick body can tell you it’s a constant thought. Body neutrality says you can thank your body for what it does for you instead of what it looks like but sometimes, all my body does is continue breathing as I wait for the painkillers to hit.
Once in a while, the clouds part, and I see myself more holistically. I manage to remember that my body is a miracle. Sometimes, I’m in awe of what I’ve lived through. I just want those thoughts to be louder than the other voices in my head— the one that counts calories and calls every outward show of inward illness a betrayal. And I’m trying. Sometimes it seems like there is no end to the mourning, but if my chronically ill life is one of mourning, it is a life of growth, too. May I start to accept that growth, in any form it takes.
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