I have been sick for most of my life. This is both incredibly simple and incredibly complicated. Here is the short version: my immune system does not know how to protect me. My body attacks itself and I become inflamed. I am always in some type of pain.
I was 14 when I was diagnosed with Crohn’s disease, an inflammatory bowel disease with no known cure. Countless medications, several surgeries, a handful boyfriends, and a few periods of remission later, I was unexpectedly thrust into a new kind of sickness. At 27, without warning, I experienced crippling lower back and hip pain. After months of failed treatments and tests, I was diagnosed with Ankylosing Spondylitis, a type of autoimmune spinal arthritis common in people with bowel diseases. From then on, my fate as a very slow-moving person in constant need of a restroom was sealed. I cope with my disabilities by perpetuating two possibly false facts: one, that there is humor in illness; two, that one day I will no longer be ill. I have learned that while there is no appropriate time to tell someone that your spine would love nothing more than to fuse with your pelvis, there is definitely a joke in there somewhere.
Before I fell indefinitely ill, I experienced two blissful years of love as a healthy person. Derek kissed me in the music closet on Valentine’s Day in sixth grade. Marcus told me I was beautiful and held my hand at a winter dance. There was a sordid encounter during a matinee screening of Titanic with a boy from another school.
After nearly 15 years of practice, I can assure you that there is a specific look reserved for the moment someone realizes you are fragile. I used to prep prospective partners for this when first dating them. “I have this illness,” I’d explain. “I may look okay now. This is the fun part. We are drinking gin and laughing and my hair smells nice and we’re telling each other our greatest hits stories but one day I will inevitably drop off the radar or my medication will fail. I’ll find myself in need of a gastroenterologist, a rheumatologist, and a steady hand.” My hair does not smell nice at the hospital. They do not serve gin there, but most of the time there’s morphine.
Men my age, single men, have not mastered the art of concealing their reactions when faced with the prospect of a breakable me. It’s more delicate than horror, slight enough that I’ve had to see it again and again to notice. And even then only after looking backwards to figure out what went wrong.
I’m not sure how or when men learn to comfort. I did not grow up being comforted by a father. I was raised by women. To compensate for this, I’ve had a long history of dating men whose arms I could collapse into. When you are buried in someone’s chest you cannot see fear spread across their face. Scared men have held my hand in hospital rooms. They have walked me and my IV pole down endless fluorescent hallways. They have reached out towards me through MRI machines and sat next to me while I’ve been infused with all sorts of potions that haven’t quite worked yet. They have listened through bathroom doors and pulled over on highways.
At different points, those men fell away. One couldn’t bear to make the hour-long drive to the hospital, opting instead to sleep with a much healthier college classmate as I recovered from surgery one winter. One explained that I was “too much, all at once,” which may, in fact, be true of my overall personality, but also particularly descriptive of his alcoholism and general air of resentment. One suggested I call a cab to take me to the emergency room as he was busy at the time. I phoned my parents instead.
By the time I met Jacob I was exhausted from years of apologizing for being a burden. One of our first dates was spent in the infusion wing of the University of Washington Medical Center, him snacking on complementary saltines and keeping me occupied as I received large bloody looking doses of iron through an IV. Sitting side by side in vinyl recliners, surrounded by nurses and sleeping patients, we spoke like any couple in the beginning stages of a romance. We could have been anywhere at all.
Two people rarely enter into a relationship knowing that one of them will be chronically ill. That comes later. Years in. After longer, more serious commitments have been made. So often, “I love you” carries with it a list of requests: do not leave, do not reject me. How do you ask someone to love you in sickness and in health but mostly in sickness? I’ve found that it’s not about them bringing you flowers two months in. Will that person gently hold your parents’ hands as they wait for you to come out of surgery? Will they kiss the fresh scar that runs the length of your torso? The most important thing is endurance.
Jacob enters into each new challenge with such blind optimism that I never realized what a cynic I was until we lived together. The man was born to make the best of it. When high doses of steroids like Prednisone render me ravenous and unable to sleep, we take advantage of early morning breakfasts and new energy for household projects. When flare-ups make leaving the house unbearable, we are indoor people. He is my partner on the couch with our dog between us and matching Apple devices on our laps. When I had over a foot of my digestive tract removed last March, Jacob reveled in ordering a la carte from the hospital menu and watching marathons of our favorite television shows as I provided pain medication-fueled commentary from my bed.
It was not always like this. The first time I got sick, really sick, while Jacob and I were together, he was surprised that I didn’t look ill. Many people who struggle with chronic illness will explain how agonizing it is to regularly be told, “Well, you don’t look sick!” With the exception of a limp that comes and goes and steroid-induced moon face, my disabilities are outwardly invisible. Barring the breakdown of society as we know it, this genetic casserole of autoimmune disease I’ve been handed will probably not kill me. I have a superior support system, health insurance and time. Jacob and I are co-conspirators in managing my illnesses. After years of practice, he can read the look of otherwise imperceptible pain on my face just as I can sense his eyes on me from across the room, or the weight of his hand on the small of my back.
Flannery O’Connor, who died of complications from Lupus at the age of 39, described sickness as a place where “nobody can follow.” Chronic illness is isolation. My brain will focus on the smallest things during a night spent in the bathroom or lying in bed with a heating pad, hoping for my medication to kick in. A single line of a pop song will play over and over in my head as Jacob snores next to me in the dark.
Recently, I was hospitalized for a lung infection most likely brought on by the combination of immunosuppressant drugs I take. Jacob drove me to the emergency room after he arrived home to me struggling for air with our tiny dog making worried circles around my ankles. We spent the next few days in a holding pattern that has become all-too familiar, with him and my parents trading shifts while a team of doctors struggle to figure out what, exactly, can be done about me this time. So far, my immune system is a stubborn mystery and, as usual, I was prescribed a new set of drugs with no real explanation of what landed me there in the first place. Jacob as always, is cautiously optimistic, but I’ve been traveling alone in this body of mine long enough to know better.
Chronic illness is what happens when you’re busy making other plans. At some point, you learn to adjust. Before my last hospitalization we had arranged for a weekend away on the Oregon Coast to celebrate our anniversary. “It doesn’t matter if you’re not feeling well,” Jacob explained as we walked from one end of the hospital floor to the other, both of our hands steadying my IV pole, “we’ll build a fire, sleep in. It’ll be easy.”
Three weeks later, he asked me to marry him on a beach in Oregon in the pouring rain.
Previously: What We Have Going for Us
Photo via dougtone/flickr.
Drew Zandonella-Stannard has been writing about the Internet on the Internet since 2002. She lives in Seattle and thinks you're swell.