Coping | Daily Life | IBD
Several months ago, I wrote a blog about “Reclaiming My Body” in the face of IBD and other chronic illnesses. A few months after I wrote that blog, two double balloon enteroscopies confirmed that the medications were working and my Crohn’s had finally reached long-term, steroid free remission for the first time since my initial diagnosis 3.5 years earlier. As much as I have been relishing in my remission, I have also spent much of my time addressing other physical and mental illnesses that were boiling over on the back burner while Crohn’s was the main focus. As I try to heal and make a home in this body, I am exhausted by the constant process of recalibrating and reconfiguring my life to the needs of my illnesses. With so much out of my control, I am trying, again and again, to reclaim my body.
In the months since I found out I am in remission, I have regained much of the weight that I lost due to Crohn’s, medication side effects, and an eating disorder. I am glad that my body is strong enough to put on weight again, but the process has been uncomfortable, and forced me to attend to my least favorite errand of all time: shopping for clothes.
I found myself in front of the dressing room mirror, staring at my body and marveling at this organism that feels remarkably foreign for something I technically “own.” Did my skin always droop like this? I pinched at my belly. Or is this a byproduct of all the weight lost and then redistributed (thanks to steroids) and then regained again? I know those scars weren’t always there, I thought, poking at the 3 small incision sites from a gynecology laparoscopy I had back in September. I wish the surgeon had told me beforehand that the surgery would permanently change the shape of my belly button. I sighed, staring at this belly button that looked “normal” but didn’t look like mine.
At home, armed with a few pieces of new clothing, I gazed at my drawers full of too-small clothing and wondered how long remission would last. Should I keep the too-small clothes, in case I only have weeks or months, or a year of remission, and my weight plummets again? Or am I just cluttering my closet unnecessarily? What I really wanted to know was, how long will my body be this way, before it changes again? How much time will I spend trying to make a home in this body before it betrays me again? How many times can a home crumble and be repaired before it becomes completely unsalvageable? How can I ever find comfort, safety, and ownership in a home that I know could implode in a million different ways at any moment?
Sometimes, I have an intense urge to take my body off and throw it away. Please, universe, let me start fresh with a new body, I plead. One that has fewer scars, one that doesn’t hurt so damn bad, one that feels safer, one that is more comfortable with being queer, one that hasn’t been poked and prodded in so many undignifying ways. One that belongs to me and only me, not to my illnesses, and not to the medical system, not to my insurance company, and not to the lawmakers who control LGBTQ+ rights.
When I wake up aching in pain at 2 am, I fumble around, wishing for a zipper. Where is the clasp I can yank to take this torturous meat sack off? I writhe around in frustration, trying to calm myself from the claustrophobia that comes with chronic pain.
It is cruel that illnesses can swoop in and hurt a body so much so fast, while healing is so slow and almost imperceptible. But the healing is happening, I know. For one, I can now take long, soothing baths, something that used to cause intense fits of panic because my body just didn’t feel safe enough to look at. And I take daily walks, trying to appreciate my body for carrying me through the neighborhood so I can see the dogs and flowers and birds and kids and trees. I can’t walk as far or as fast as I want to, but I am learning to be okay with that.
I do my pelvic floor physical therapy exercises, giggling as I roll around on a squishy exercise ball while my cat paws at my toes. This body can be silly, I remember. And I can eat cake now! A delicious gift of my Crohn’s remission and eating disorder recovery. Seemingly small, but genuinely monumental moments.
I think about all the moments my body has survived, even when the circumstances were intolerable at best. I think of how my body has carried me through every day of the pandemic, every day of my illnesses, every moment of homophobia/queerphobia, every moment of trauma, and every moment of me cursing my body and wishing it away. No matter how much hatred I give my body, it keeps going the best it can.
I think about my Girls With Guts friends and how much our bodies have collectively survived in order to be alive together in this moment. It is remarkable, when you really think about it: the endurance of our collective survival, healing, and joy. At this point, I don’t know if I will ever “reclaim my body” or feel at home in myself the way I did before Crohn’s. But I do know that, even when I can’t find peace in my body, I find peace in claiming a spot in this community. And what a sweet relief that is.