I have lived in chronic pain for most of my adult life. I have had Thyroid cancer, Crohn’s disease, arthritis and other peripheral maladies. One thing I can tell you with absolute certainty is that the difference between living with and giving up has almost always lived in kindness.
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 restroom to relieve it, my cold, shaking body let go three steps from the top. The problem in a situation like that, I have since learned, is walking makes it worse, and stopping gets you nowhere.
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 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?” she asked. 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 did my disgusting laundry.
While the moment remains one of my most humiliating, I think it’s important to reflect on the kindness this woman showed me. She didn’t have to help me. She had a lot to do, she was at work. She had a life that did not include cleaning up after me.
We have this assumption that in shameful situations most people will be cruel. They will point and laugh; they will walk away disgusted and/or they will not help. I’m not sure if that comes from the playground, the horrific news cycle, bad TV or our own insecurities; but in my experience with shame, it is mostly false.
This example of kindness and help is just one of many I can recount. This woman stopped what she was doing to help me clean up. She looked at me, naked and shaking, sitting next to a pile of wet and dirty clothes that should probably have been thrown out, and she held out her hand to take them. She washed my clothes, and in doing so washed away some of the shame that had covered me, too. Her kindness was a work of grace.
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.
The muck of living in chronic pain can leave you feeling like there’s no goodness out there, that no one can understand and therefore no one can care. I have experienced – and the women I interviewed have also experienced – repeated dismissal, silence and shame by some of the people who were supposed to care for us.
But these are not the only experiences I have had. Many people in my pain-related life have been saviors. I have had many doctors, nurses, aids, therapists, instructors and friends who have done everything in their power to make me well. My gratitude runs deep.
The women I spoke with for my book lit up when I asked them to tell me about their experiences with kindness. In almost every case, the women were happy and eager to recount moments and people who have changed their lives simply by being kind.
Samantha was in a near-fatal riding incident in the mid ’90s which left her with severe, constant chronic pain in her leg and shoulder. She told me, “Oh, I’ve run across many kind people, too many to count. A couple jump to mind. The first was a nurse who figured out a way to wash my hair in the hospital after my accident, without my having to ask. She knew it was bothering me to have dirty hair. Her name was Sophia. I’ll never forget her. The second was a paramedic who held my hand in the helicopter on the way to the hospital. Never got his name, but I do remember his smile, and the way his simple human touch made me feel that everything would be okay.”
Studies show that delivering health care with kindness leads to faster healing, reduced pain, increased immune function, lowered blood pressure and decreased anxiety. According to Dignity Health, “In a randomized controlled trial of patients with irritable bowel syndrome, patients who were treated by practitioners who were warm, listened actively, and expressed compassion for their condition experienced less pain, less severe symptoms and greater health improvement than other patients in the study…leading to a general conclusion that better communication and listening have a positive influence on controlling pain.”
Love is big, but kindness is often small. Reaching out instead of recoiling. Checking up instead of writing off. Texting, nodding, smiling. A one-armed hug. A calming song, a cool cloth. A sweet phrase. A compliment. Small gestures that in retrospect, make huge differences.
To the nurse who washed Samantha’s hair, it is probably just something she is happy to do. To the woman in the black T-shirt, maybe I’m a funny anecdote or maybe I didn’t register much at all. I’m sure, to her, it seemed like a very small thing; but to me, it was huge. There is no doubt that small acts of kindness like these helped save my life.
*** Watch for an excerpt and giveaway of Francesca’s book “Not Weakness: Navigating the Culture of Chronic Pain” coming to KOM in April. ***