A Life Interrupted
By Carrie Trecker, PWC

In spite of my fevered delirium, I still remember lying on the cold floor of my college dorm bathroom slamming the door against the lock waiting for someone to hear and call for help. No one heard me. Miraculously I was able to crawl back to my room, waking later in a stupor of vertigo and sweat. It’s merely the flu I remember thinking. Little did I know my life would never be the same. Five years later I’m still looking for answers—still optimistic. What happened in between chronicles my life with this incorrigible, virulent illness known as chronic fatigue syndrome.

Following my collapse and “mysterious virus,” as the doctors liked to call it, I followed their orders and retreated to my parents’ house to recover. Recovery didn’t come. Instead the illness waxed and waned, ebbed and flowed, came and went, teased and taunted, but never disappeared completely. I’m sure my story follows that of many of my fellow PWCs:  a search for answers, a search for life, a search for compromise. I rode a wave of emotions through denial, anger, guilt, depression and acceptance. I think I can finally write the story of my illness because I’ve reached acceptance—not an acceptance based on despondency, but in the name of moving on. Sure I’ve put my dreams of becoming a professional athlete on the back burner (okay, that may never have been a possibility), but my happiness will not suffer.

In the beginning my college doctors ran out of options and unloaded me to the psychiatrist. She found my weight loss, fever, fatigue, chills and other symptoms to be consistent with freshman depression. The doctor thought a little Prozac should do the trick. The little miracle pills didn’t help. Exhausting my resources I traveled to Washington, D.C. , looking for answers. Enter my first experience with underqualified doctors, megadose vitamins, minerals, herbs and inflated prices. Drained of money and finished with my first year of college, I retreated home in hopes of finally finding a name for my illness, and a cure.

First the diagnosis was Epstein-Barr virus, then mono, my thyroid, anemia, then adrenals—but nothing panned out. I found myself searching out new doctors, specialists in one area, presenting my symptoms in a way that guaranteed I’d get more blood tests and a reassuring speech from the doctor. I loved blood tests. I thought the results would offer me a chance for irrefutable results, results on paper, results that meant I wasn’t a hypochondriac. A few irregularities showed up here and there, but nothing substantial appeared, nothing to account for my severe symptoms the doctors told me. A few admitted they couldn’t help, but most opted for antidepressants and some even lashed out, calling me names and making accusations. One outspoken doctor asked me how I expected to get anywhere armed with a “kiss my ass attitude.” Like others she had mistaken my exhausted appearance for arrogance and aloofness. I became my own doctor, looking outside the box to find alternative treatments. I read every book I could and personally paid to see alternative doctors with promises of healing.

I decided to see one of the leading internal medicine doctors in the country, and he told me what I’d been avoiding for two years—I had chronic fatigue syndrome. I’d avoided this eventual diagnosis because I didn’t think I could live with the possibility of having no out, no cure. The doctor gave me pills for sleep, energy, adrenals, thyroid, anxiety and infections. My body rejected them all. I could no longer tolerate even tiny pieces of these drugs. Stimulants gave me heart palpitations, anxiety and insomnia, while depressants made me dizzy and fuzzy headed. I also became very aware of the negative stigma surrounding such a diagnosis. Throughout this time, only my family and closest friends knew of my illness. Everyone else thought I was reclusive. I made up excuses for why I couldn’t go out, fearing my peers’ reactions to an invisible illness that had no outward signs. Plans were broken and friends were lost. Solitude became my companion. Time passed and life went on for those around me—jobs, apartments, engagements, graduation—my gregarious nature retreated further inside.

For the next year I continued on my quest and found a few therapies that brought interim relief. I was cautiously optimistic. Plans were tentatively made, friends called, parties attended, all with prudent planning and without disclosing how weak I sometimes felt. On a weekend visit with a friend, dizziness and insomnia ominously appeared. Lying awake in her dark apartment, I clutched the side of the bed, feeling the room spinning around me, opening my eyes only to see the clock sluggishly approach daylight. By the time I returned home, I knew I was in big trouble. I spent the next three months in complete bedridden hell. It was the lowest and scariest time of my life. I knew I faced a formidable opponent. My mother left her job to look after me because I was unable to care for myself. Days would pass without bathing—crawling to the bathroom was a daunting task accomplished only with assistance. Vanity seemed a pleasure of the past. Sweats were my only attire and my hair grew unchecked, eyebrows unplucked, legs unshaven, makeup unused. Midnight phone calls to doctors were followed by emergency room visits, but no one knew how to help me. Patience and fortitude paid off and I improved over the next year, reaching a plateau of mediocrity. Some days I spent running errands, resting as needed, and others I spent in a supine position, counting the time and waiting for my elusive energy to appear.

Today my health follows no set pattern. I still chase down doctors and blood work, new tests, new drugs, new labels—all in the name of a cure. This week it might be dormant Lyme disease, next week hypothyroidism. It is only a matter of time I tell myself. I will find something accountable, something treatable. In the meantime I focus on the good. I’ve found that I like to write, do crossword puzzles, learn new words, read and listen to good music. I take online classes and hope to have my bachelor’s degree by December. Being a medical enigma, I’m inevitably drawn to my plight and I plan to attend medical school some day. I’m not the average 23 year old. In fact, I’m a stark contrast to my peers, but hopefully I’ll find a balance that favors my convivial personality. I have come full circle with this illness. Although I feel hope for my future, I do fear suffering a relapse and a life of seclusion. By focusing beyond my symptoms I hope to use my illness to help others through words, education and practice.

I dedicate this story and my health achievements to my family and closest friends. They have stood by me with unabashed love, support, strength and patience. I don’t know how you do it, but I’m forever grateful.