The first time I lost control of my bowels, I was on the platform of the Number 6 train. I was twenty-six, and a cup of coffee I’d sipped led to stomach pain I can only classify as agonizing. Though I did everything I could to get up the subway steps and into a nearby restaurant to relieve it, my cold, shaking body let go three steps from the top.
Now covered in a putrid brown film no one could mistake for anything else, I sprinted in shame to my gym, a place that had been my salvation. I rushed into the shower with all my clothes on, peeled them off, pumped bright green body soap into the crotch of my jeans, and threw away my balled-up underwear in a naked dash from the scalding shower to the metal bins.
A young woman wearing a black staff T-shirt approached me in the locker room when I finished my shower. I had seen her many times before, folding towels mostly, mopping the floor, and I always nodded my hello. She always nodded back.
“Are you okay?”
I was unable to speak.
“Do you want me to wash and dry those for you?” she asked gently, pointing at the heap of wet, smelly clothes on the bench beside me.
I sighed and nodded my thanks and sat in tiny white towels for the next forty-five minutes while this beautiful woman dried my crap-stained clothes.
While the moment remains one of my most humiliating, I think it’s important to reflect on the kindness this woman showed me.
Her kindness was a work of grace.
Once they were washed and dried, she handed me my clothes in a Rite Aid bag someone had left behind. Still shaken into silence, I did a sort of half bow, which in retrospect was so inadequate, it still haunts me. I put my clothes back on and started the walk home: seventy-three blocks, two avenues and one bridge, just so I didn’t have to get on the subway again.
At the time, this was the most humiliating day of my life (there would be much more humiliation in my future, but I didn’t know it yet), and my response was to bury it deep within me. It was only the beginning of the shame I would experience in the next two decades living with a number of autoimmune diseases, which triggered and caused severe, everyday pain and the total breakdown of my body.
What is Autoimmune disease?
Autoimmune disease is a condition in which your body, thinking it is attacking a foreign substance or virus, instead attacks itself. In the case of Crohn’s and colitis, this battle takes place in your intestines. Sometimes the pain is mild and occurs after you eat. Other times it is severe and violent, causing your gut to react by trying to expel the food that upsets it as urgently as possible.
Crohn’s and colitis often present with arthritis of the hips and back, and both diseases are also often married to thyroid malfunction. In thyroid diseases, joints swell and hormones get out of control, causing severe muscular-skeletal pain as well as emotional and mental distress.
Because of the thyroid dysfunction, as well as the humiliation and shame of my daily life, I was left believing I was worthless, my life was a waste, and it was never going to change. I know now that is a hallmark of depression—feeling worthless—but at the time it was new to me.
And it felt like an ending.
Nothing else is important when you are in severe pain. People may say, “Go to work. Stop spending too much money. Eat well. Laugh. Take good care of your children. Be a good wife. Exercise. Chill out.”
My mind screams back.
“But don’t you see what I’m already doing here? Don’t you see how hard I’m working just to remain upright? Just to be here?”
And of course, they can’t see it. Maybe they can see it in my face—the scowl misinterpreted as a bad attitude, a complaint, martyrdom, or pessimism—but they don’t see the fire, the ball burning deep in my gut, which demands I pay attention only to it. I can’t blame anyone else for not understanding the pain I feel. I can’t blame anyone for inflicting it upon me. I can’t blame nature because I realize I am insignificant in the realm of the universe, and I can’t blame my life because it has been fortunate in almost every other way.
You see where this is going, of course. If I can’t blame any of those things, then the logical place to land the blame is on myself.
Many of us living a life of pain are shamed into a state of defeat. The days stretch and time slows. We lose contact with friends and family. We are alone with the realization that the lives we imagined for ourselves will not be the lives we will live. We realize we cannot get out of this. Women in chronic pain are often on their own, hiding their pain and weakness from a world in which they are met with shame.
I wonder why we feel shame. How does shame change us?
According to Brené Brown, a popular author, lecturer, pod-cast host, and researcher at the University of Houston, shame is an “intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging. It’s an emotion that affects all of us and profoundly shapes the way we interact in the world. But, depending on how we deal with it, shame can either shut us down or lead us to a new sense of bravery and authenticity.”
Brown explains that “neuro-biologically, we’re wired above all else for survival, and shame is a threat to connection, a threat to survival.” Everyone has shame, but for those of us who experience it mostly around our body’s malfunction, it seems tangled up in the unfixable reality that is chronic pain. Every woman I spoke to talked about shame. Without exception, these women had experienced severe shame related to their pain, and some of them were still mired in it.
One of the major reasons I wanted to write a book on pain — mine and that of a group of other women interviewed — is that I hoped to confront some of the shame we all have. Sometimes it is buried so deep inside us, we don’t even know it’s there.
My hope was that in writing these stories, I could get us to a point where we can acknowledge that our bodies and the pain they experience do not deserve the level of shame we shroud ourselves in. And maybe, once we can look that in the eye, and knowing a community of people also feel this too, we can give ourselves permission to let some of that shame go.
Francesca Grossman is a writer and writing instructor. Her work has been published in The New York Times, Brain, Child Magazine, The Manifest Station, Ed Week, Drunken Boat, and Word Riot, among others. She runs writing retreats and workshops internationally and leads an annual intensive workshop at The Harvard Graduate School of Education. She has a BA and MA from Stanford University and a doctorate from Harvard University in education. Her acclaimed instructional manual Writing Workshop; How to Create a Culture of Useful Feedback is used in universities and workshops all over the world. Francesca lives in Newton, MA, with her husband and two children.