Chronic Illness, Depression, and Learning to Love Myself Again
How One Simple Mono Infection Ruined My Life And How I Finally Learned To Let Go And Love Myself Again
Infectious mononucleosis. It stole my vitality, and shattered my childish illusion of invincibility. Ravaged my body and left me in pieces, my life as I knew it cleaved into two parts: the before and the after.
Epstein Barr Virus or EBV is the root cause of infectious mononucleosis. It is a stealthy intruder that nearly everyone will be exposed to in their lifetime yet most will never know they have it. The virus often operates in silence, capable of residing in you without a trace, showing no symptoms to betray its presence. The danger, then, lies when you unknowingly pass it on to others. Ninety-five percent of the world’s population will have been exposed to EBV by the time they reach adulthood yet only fifteen to twenty percent of teenagers and about forty percent of exposed adults will actually develop infectious mononucleosis or mono. For the majority of those infected it is nothing more than a passing inconvenience, but for others the disease can cause myalgic encephalomyelitis otherwise known as chronic fatigue syndrome and for others still it can switch on the autoimmune gene opening a pandora’s box of debilitating conditions including multiple sclerosis, rheumatoid arthritis, lupus and more.
I remember next to nothing of the initial infection. I was sixteen and I shrugged it off as the flu’s unwelcome visit, a temporary inconvenience soon to be replaced by the typical ebb and flow of seasonal maladies. No suspicion crossed my mind even after a trip to the pediatrician’s office revealed that I had an enlarged spleen and swollen liver and a blood test confirmed mononucleosis. I was told it would go away in a few weeks. In reality it was more like two months.
It was only after the mono had gone that the real trials began. My intestines succumbed to a sluggish rhythm, the frequency of my bowel movements starting to decrease from every three to four days down to one week, then two, until finally I had no urge to defecate at all. Worse, I felt nauseous and tired after eating, barely able to keep down a peanut butter sandwich or a bowl of tomato soup. I lost weight rapidly going from ninety seven pounds to ninety within a year.
The rhythmic contractions of peristalsis, once a seamless orchestration, had now become a disjointed cacophony. In a healthy large intestine, the parasympathetic nervous system sends signals to the muscles, triggering wave-like contractions that move the digested food along, eventually culminating in a bowel movement. But in a colon plagued by gastrointestinal dysmotility or colonic inertia, damaged nerves compromise these signals, resulting in slow transit constipation. This condition is characterized by a reduction in the normal muscular contractions and obstruction of nerve signals to or from the rectum and anus, resulting in incomplete bowel movements and fecal impaction.
The act of elimination is an unquestioned routine for every living being on Earth. The simplicity of this process is often taken for granted, until the day that very primal act becomes an impossible feat. Yet, there I was, sixteen and facing the daunting impossibility of defecating without the aid of laxatives. I tried everything. Crazy diets to reduce inflammation, high fiber and paleo fads, gluten-free and Mediterranean diets. I took stool softeners and fiber supplements, enemas and suppositories which never did work. Then it was on to Miralax, one capful a day, then two, four and six, until finally I turned to dulcolax, or bisacodyl as it’s known generically, one of the most potent stimulant laxatives on the market. I started on them when I was seventeen and though I didn’t know it then, those harmless looking pills, tiny and orange and sugar-coated, signaled the beginning of the end.
At eighteen I weighed little more than eighty pounds and was faced with two options: a feeding tube or an ileostomy bag. I chose the latter. And while my ostomy eliminated the functional problem of evacuating my bowels, the dysmotility was still there and worsening, eventually spreading to both my stomach and small intestine. It would be years until I would receive an official diagnosis for what had caused my intestines to shut down. But my sluggish digestive tract was only one of many problems. After my first ostomy surgery, symptoms once relegated to the periphery took center stage.
Often, I woke feeling like I’d been hit by a truck. My limbs were heavy, every movement a Herculean effort. Since childhood, my joints had been unnervingly flexible–my elbows, knees, and wrists all bent backwards effortlessly and I could pop and crack nearly every joint in my body including several vertebrae in my spine. My once-flexible joints, which bent backwards effortlessly, now caused persistent, deep aches. As a child, this pain had been brushed off as growing pains, but at nineteen I had stopped growing long ago. Sometimes it was hot and searing, other times it felt as if the steel-toed boot of some invisible being was wedging its way meanly into my back or tiny elves were scampering up and down my limbs smashing hammers into my hips, elbows, wrists, and knees.
Then, there was the fainting, the creeping blackness which took over the entirety of my vision, the blood roaring in my ears, my heart leaping against my ribcage like a prisoner demanding to be let out. It happened all the time. I blacked out when I got out of bed in the morning and when I took a shower, though miraculously I always managed to break my fall, careful to never crack my skull open on the marble. I also began to develop the sensation of pins and needles, sharp and prickly like the zaps of an electric current which engulfed my hands from my fingertips to my wrists and my feet from my toes to ankles. Strangely enough, my hands and feet felt both scalding hot and ice cold at the same time. At first it was more annoying than anything, like all four of my extremities had fallen asleep, but as time progressed it got worse. Eventually, I was prescribed gabapentin so I could once again sleep through the night without the numbness and tingling waking me up.
At the same time, I began experiencing flares of red, swollen hands and feet. The burning pain felt like my flesh was on fire, making my extremities feel foreign. My wrists and ankles felt brittle, and the pins and needles sensation intensified. These episodes, though short-lived, left me incapacitated, unable to walk or type, and confined to my bed.
But most distressing of all, was the exhaustion, which came accompanied by its buddies: brain fog, dizziness, and heart palpitations. I struggled to stay-awake in packed lecture halls, unable to focus or internalize information. My chest hurt, and my brain felt slow, inputs and outputs disrupted, as if underwater. It came often after eating, manifesting as a food coma even though I ate little. Skipping breakfast and eating light lunches didn’t help. I felt nauseous and chilled like a human popsicle, as if an ice cube replaced my insides, my teeth chattering despite the mild Californian weather. Friends would pull me aside, asking if I was okay. I looked worn-out. My eyes, once sparkling and bright, were dull rimmed in dark circles like that of a raccoon. Most days I didn’t have the energy to cover them up with makeup and so the heavy bags remained, a reminder of the exhaustion that clung to me like a second skin.
In a few years I had gone from an energetic overachiever, someone who did everything and anything, to someone I barely recognized, a shell of a person existing on autopilot, a ghost of the girl I’d once been. Eventually, the diagnoses began to trickle in. Ehlers Danlos Syndrome explained the joint pain. Postural Orthostatic Tachycardia, the dizzy spells, fainting and fatigue. Small Fiber Neuropathy, the numbness and tingling in my hands and feet, along with the strange flares. Yet, while I had explanations for all these smaller problems, the diagnosis for my main issue–the failure of my colon and the progression of dysmotility in my stomach and small intestine–remained elusive. And like many chronically ill individuals bounced from doctor to doctor, each running test after test, only to be sent on to the next specialist, searching for a name, a cause, a reason for their suffering, I became depressed. At one point, so much so, that I attempted to take my life.
Depression is a heavy weight, an anchor that drags you into the depths of despair, making every day feel like an insurmountable challenge. For years, I carried that weight, each doctor’s appointment and test result adding to the burden. I felt trapped in a cycle of disappointment and frustration, my identity becoming intertwined with my illness. I began to see myself only through the lens of my suffering, defined by what was wrong with me rather than who I truly was. But there comes a point when you have to make a choice: to let the darkness consume you or to fight for a sliver of light. Learning to love myself again was not an overnight transformation; it was a gradual, often painful journey. It began with small acts of kindness towards myself. I started by acknowledging my pain and frustration without judgment, allowing myself to feel the full weight of my emotions rather than suppressing them. I reconnected with my passions. I started drawing, reading, and writing again. And, perhaps, most importantly, I learned to be gentle with myself. On days when depression felt overwhelming, I gave myself permission to rest and to be kind to my body and mind. I practiced self-compassion, treating myself with the same kindness and understanding I would a friend.
In learning to love myself again, I discovered resilience and strength I never knew I had. I realized that while my illness is a part of my story, it does not define me. I am more than my symptoms, more than the tests and diagnosis. I am a whole, complex person deserving of love and happiness, just like anyone else. Eventually I was diagnosed with a very rare disease called Autoimmune Gastrointestinal Dysmotility, or AGID, a type of autoimmune autonomic neuropathy in which the body’s immune system mistakenly attacks the nerves that control involuntary bodily functions, in my case the gastrointestinal organs and digestive system.
