Post Diagnosis: Learning to Live With Your Assassin

By Sarah Birdsong

Mere weeks after Hurricane Irma raged her way through Atlanta in the month of September, 2017, I sat on the patient bed of my local gastroenterologist. The white paper crinkled beneath my weight as I shifted uncomfortably, the whole of my abdomen strained.

Initially, I believed I’d come down with the flu. I can’t say for sure exactly how it happened. One morning as I prepared for work, I simply felt “off.” I took my Vitamin C, I upped my Zinc dosage, and I went on about my way. The succeeding weeks saw me admitted to Urgent Care, and finally to the specialist whose office I now sat in. After multiple tests and a referral to the gastroenterologist at the local university hospital for a colonoscopy, she concluded there was nothing wrong with me. I must have a stomach bug.

Except I didn’t recover. Over the next four months, I was hospitalized three times with rapidly worsening symptoms—debilitating nausea, violent emesis, and virulent diarrhea. I baffled the doctors who came to recognize my name on paper among an ocean of other emergency visitors. My panels and labs returned unremarkable but for the elevated hemoglobin typical for my symptoms. The next handful of weeks saw rapid deterioration into worsening flu-like symptoms that nothing could remedy, whether over the counter or prescribed by Urgent Care. It all came to a head when I was brought to the ER for the fourth time for severe dehydration and debilitating stomach pain. I was summarily admitted to the hospital.

By this time, I’d lost nearly 30lbs from my original 155lbs, I was becoming dangerously thin, and I could no longer stand unassisted due to the severe cramping in my legs. My IV tree bowed beneath the weight of numerous intravenous solutions to replace the minerals my body was losing quicker than it could replenish. Despite being outfitted with lactated ringers to alleviate my dehydration, nurses and doctors checked my hands and feet incessantly for cyanosis—discoloration to the extremities caused by low oxygen in the blood as a result of severe depletion of bodily fluids. My blood pressure was frighteningly low, my heart rate wildly accelerated, my breathing rapid and shallow.

I was given fluids, pain medication, and the recommendation to use over the counter flu medicine to relieve the remainder of my symptoms. I was ultimately prescribed prednisone, a steroid my doctors thought might subdue my symptoms, and told by my then primary specialist to “get off Web MD.” My endoscopy and colonoscopy revealed nothing that seemed to pique their interest. I was an otherwise healthy 29-year-old woman, they said. They had “no reason to believe this was anything other than a passing thing.”

It wasn’t. In the months that passed, my condition would rapidly worsen, blooming into an ever growing list of related health conditions. In February, I was formally diagnosed with Crohn’s Disease and treated with Remicade. Although it was meant to treat my cascading inflammation, my appetite, my vomiting and diarrhea, it made no discernible difference in my condition. Despite my steadily declining health and weight, my doctor continued to disregard my concerns. By May, 2018, weighing 97lbs, I developed five blood clots; three in my leg composing a deep vein thrombosis, and a bilateral pulmonary embolism with an infarction, which is described as an obstruction of the blood supply in the lung. Because of this trauma to my lungs, I developed pleurisy, which is inflammation of the pleura tissue surrounding the lungs.

Later, because of the pronounced difficulty I had in walking as a result of my malnutrition and muscular atrophy, I fell and concussed myself. By the time I achieved remission in July, 2018, with Humira, my body was so severely catabolic that it was beginning to steadily shut down. That August, I was hospitalized for the final time, which lasted nearly a month. I weighed 87lbs. During this time, I was placed on total parenteral nutrition through a peripherally inserted central catheter in my arm. After I was stabilized, I was released into the care of an in-patient rehabilitation center, where I would learn how to walk and eat again.

From there, I began to make short but measured strides towards a new kind of wellness and normality with the help of a doctor who finally believed me and with the support of my local community.

*

A diagnosis with chronic illness later in life is not unlike a kidnapping. It’s easy to develop a kind of Stockholm Syndrome with it as you learn to navigate the world with your new shadow. Your assassin. It begins to burrow into your mind until you are in danger of developing unhealthy habits in an attempt to survive one day at a time. Learning to live with my assassin is the greatest trial I’ve ever endured. At best, you’re able to draw up a peace treaty. It only holds as long as you remember to abide by the strictures.

Added to this, society has ingrained in us the idea that our happiness is inextricably linked to our health. There is no way someone chronically ill could or should be happy, it insists, kicking us when we are already down. But it’s easy to link happiness with health. If you’re unable to do what you want, when you want in a body that does as it’s told, how can you lead a fulfilling life? Breaking free of this societal brainwashing and your assassin’s hold over your heart is a battle.

When you don’t know what is going to catapult whatever faculties you have left in your body over the divide, likely to only be remembered fondly and with tears later on — when the thing you could tolerate yesterday makes you violently ill today — when you have to cancel on plans for the umpteenth time — when you become so ill you are dependent on others for even the most basic of daily needs — it’s easy to believe you’ll never feel fulfilled in life again.

These little heartbreaks blend together, creating a perfect storm of depression and feelings of worthlessness.

You’ll glean moments of happiness from the people who make you feel seen and heard. From the one who takes care of you, should you be fortunate enough to have a caretaker.

But you become a prisoner shackled to the goodwill of whoever has time that day. When you’re alone with your thoughts, the hours settle in. You’re left with all your vanishing desires and happy memories. You begin to feel as if there is no part of your life safe or untouched by your illness. The assassin lies in wait at that divide, the anxiety of the precipice threatening to devour you whole.

*

Sometimes, I feel trapped. But I can’t claw my way out of my prison — my body is my jailer. Other times I feel like I can but barely peer out the barred door and see what I used to be.

I pull the cart; I bear the yoke. The people in my life have the fine privilege of laughing while I joke about my circumstances and say, “She’s so brave! What an inspiration!” They’re able to return to their own lives while I am left with the hours, the yoke, the shackles. The assassin. They have the key to allowing them to escape. Here, all my dreams sit there on the shelf just beyond reach, while I waste away in a garden of medical accoutrements, gazing at them.

A prayer is uttered beneath my breath, barely audible against the gaining chirp of my heart monitor. These moments of sadness are intimate and private, but we don’t have to bear them alone. They’re symptomatic of your illness’ and assassin’s brand of Stockholm Syndrome over you. I struggled with them with no small degree of agony in the beginning. I craved my old life on a level of hunger for which there is no sustenance.

*

Chronic illness is defined as an illness that persists for longer than three months by the U.S. National Center for Health Statistics. They cannot be prevented by vaccines or cured by medication. The CDC reports that half of all adults in the United States have one or more chronic health conditions, and one in four adults had two or more chronic health conditions.

I was raised by a chronically ill mother, a woman whose illnesses and diagnoses vacillated as medical knowledge increased through the years. Through a never-ending stream of doctors and insurance companies arguing how much care she was entitled to, I learned from a young age the value of believing someone when they told you they weren’t well.

But empathy requires imagination. Experience isn’t necessary to power that imagination, even if people’s imaginations can be limited. Yet, all the empathy in the world cannot make you appreciate the consequences of being ill for yourself. I am slowly warming to the understanding that illness is not always a temporary stop on the way to wellness — but this does not diminish my value. When we’re young and reckless, we believe we’re indestructible. But the feeling of limitless invincibility softens with age, though for some of us, quite forcibly.

I’ve also learned the difference between sickness and illness, and that others do not necessarily share this understanding. People who are well cannot understand chronic illness. I don’t think they’re even truly capable of understanding the concept in parts, let alone sum total. They don’t know or understand what we walk daily with, hand in hand.

“You’re wrong. I’ve had the flu. I had to go to the emergency room. I understand,” they say.

But their only reference is fighting though temporary ailments; a cold, the flu, maybe a bad round of pneumonia, a broken bone. Of course, these aren’t great, but you get to leave them behind once you’re well. Once they’re gone.

Those ailments end. You go on with your life. You don’t have to think about them anymore. You don’t come out the other end with reduced abilities or options.

The concept of wellness being a net loss is a difficult one to understand from the outside. Sometimes even from the inside. I believe this is why people couldn’t fathom why I didn’t want to be hospitalized yet again over the summer for pleurisy. It marked my third hospitalization during the month of May, 2018. I railed against my hospitalization privately and publicly. But why wouldn’t I want to go to the hospital, they asked? Why wouldn’t I want to recover?

The healthy population might associate the hospital with wholeness because that is the scope of their experience with its system. They enter the hospital with food poisoning and its debilitating pain, leaving cured the next day through the power of fluids of pain management.

But the ill do not and cannot receive this boon. There is no wellness in our future; there are only timelines of disease management. Each successive visit adds to the plot, adding to an aggregated experience. Because each visit is related to the last and extends a hand to the visit to come.

The hospital is merely the combustion site of these experiences.

*

Now, as I prepare to take on my 30s, I am forced to reevaluate how I view myself. I am coming to terms with the body I now have instead of the body I had before. I must learn to navigate life with my new shadow, my forever-illness.

Every plan, every moment I’d anticipated in life has changed. I now struggle to find my way down a new, strange path on legs that do not feel like my own. Yet, I don’t do it alone.

In spite of these struggles, happiness and fulfillment are not pipe dreams to me anymore. The greatest lesson of my illness is that I have a burden, but I am not a burden. Most importantly, the people who love me are here to help me bear it. Furthermore, my experiences and desire to share them via the written word have the ability to alleviate the burden for others suffering silently.

For us in the chronically ill community, there may be no cure. We may struggle for the rest of our natural lives with fatigue, with breakthrough symptoms, with insurance.

But in the meantime, we are here.

We exist in a world not meant or designed for us, as politicians argue over how much care we deserve, as cities rise lacking accessibility options for the physically handicapped, as the medical community argues with us over the validity of our symptoms, as outliers doubt the the authenticity of our conditions.

Most importantly, our bodies we live in do not hold the keys to our happiness. Our shared experiences and struggles make us a part of a community we certainly didn’t ask for, but are no less thankful for in our darkest hours. When we need someone to understand our struggles, that community stands at the ready, prepared to listen.

Learning to love my broken parts brought me to a new and stronger sense of self — stronger than what I’d known when my body was whole. We may be ill, but this is largely happenstance. We live with illnesses, but we are not our illnesses.


Sarah Birdsong, originally from Denver, Colorado, resides in Atlanta, Georgia. She graduated from the University of North Carolina at Charlotte with a degree in Social Anthropology and Technical Writing, emphasizing in identity narratives, cultural identity crises, social sustainability, and social justice. If you like inane and broody thoughts, her Twitter is the place for you. Follow her absurd adventures on Instagram. Keep track of her work on Facebook. You may catch up on her long-form thoughts on vvitch, please!