I remember the exact moment I first became ill. It was December 31st, 1996 around 3 o'clock in the afternoon. I was walking down the hallway of my cheerful, 2-bedroom apartment, about to shower and get ready to go out with friends so we could celebrate the new year. As I got about halfway down the hall, I quite literally and suddenly felt like I had been hit with a ton of bricks. I remember stopping in my tracks as I leaned my hand against the wall to hold myself up. "What the heck....?" I murmured out loud, astounded by how abruptly ill I felt.
Dizzy, I made a beeline to the living room so that I could lie down on the couch and rest, hoping somehow that would be enough to make whatever this was go away. What bad timing, I thought, to have apparently come down with the flu on New Year's Eve. I turned on the TV in an attempt to distract myself from how sick I felt, but the images on the screen seemed so dizzying that I could barely tolerate 2 minutes of it. I had to turn it off.
My roommate walked in, and I told her I thought I might have the flu and didn't think I'd be able to go out that night. As I said the words, I distinctly remember thinking (and perhaps intuitively knowing) this was something much more significant than your average virus.
However, not one to be deterred by a silly bug (I was the type who virtually never called in sick to work), it didn't take much for my roommate to convince me to go out anyway. I told myself I'd feel better after I showered. I didn't.
We took the city bus to the comedy club in Boston that night, where we were to meet up with friends. As I sat in my seat, eyes closed from lights that felt too bright, I remember everyone's voices seemed simultaneously too loud and yet somehow distant and muffled, as though we were all mysteriously traveling underwater. I felt myself sweating from fever, though it was below freezing outside. My temperature that night, I later learned, was well over 104.
I honestly am not sure how I got through the night, except to continuously tell myself all would be better in a few days. I remember laughing and drinking and even dancing part of the night on the dance floor, my friends (except my roommate) all clueless to the fact that I felt even remotely unwell. As midnight approached, I counted down the seconds with a room full of people as we all shouted out loud: "10...9...8..." Little did I know at the time that I was not just counting down the last few moments of 1996, but the last few moments of my life as I had known it.
The next morning, I woke up in a pool of sweat with swollen glands and a dreadful cough. I got out of bed and clung to the walls as I made my way to the shower. Moments after turning the water on, I collapsed and fell to my knees with dizzying exhaustion. Something was dreadfully wrong. I fumbled my way back to bed and called my doctor.
It was 2 days later when I found out exactly what that something was. Well, sort of. The nurse called to tell me I had mononucleosis. I would need to stay home for at least 2 weeks, she said. "2 weeks?" I replied in dismay, “I’m going to feel like this for at least 2 whole weeks?" In actuality, it’s now been 13 years, and I am regretfully still counting.
When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (2 years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.
But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease. Also known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.), it is currently classified under the World Health Organization as a neurological disease. It also affects the immune, endocrine, and other organ systems. The CDC recently acknowledged CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD, and end stage renal failure. CFS also afflicts at least one million people in the U.S. Some estimates have it at over 4 million.
Yet, despite this, CFS is still one of the least funded of all illnesses in the United States. According to the CFIDS Association of America, more money was spent studying hay fever last year than on CFS.
Due to such limited funding and research, to date there are very few treatment options currently available for CFS (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, none have worked, and many made me worse.
I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (3 weeks after onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever was back full blown, and I was out of work for another 3 weeks.
Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground, and though I knew this, I did it anyway. I was of the mind-set that I could push through anything, and that with enough perseverance, I would eventually overcome.
Not so. I learned the hard way (and I am still learning) that CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the CFS world as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was 9 years ago. I have spent what was supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.
Lest you think I have merely fallen into some kind of depression or given up, I assure you I have not. I am not depressed, and I still fight to overcome my obstacles every minute of every day. In many ways, I fight harder now than I ever did before. It is for that reason that I write and share this with you today.
As most of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well educated young woman (just 24 years old). I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly 2 months driving 6,000 miles across the United States.
I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.
Despite my situation and isolation, I was fortunate several years ago to have found a friend and companion who can relate to my struggles, and who brings me hope and laughter every day. We met online, and we write daily. His friendship and sense of humor are my strength. He, too, has a severe case of CFS, and is wheelchair bound. And he, too, became ill at a young age (19) after a severe case of mononucleosis. He has been ill for nearly 25 years now.
Somewhere in the midst of writing each other for over 5 years, we became best friends and fell in love. He’s the most extraordinary person I know. Last spring, he flew out to surprise me and propose, and I (of course!) enthusiastically said yes. We are now thrilled to be engaged, and can’t wait to be well enough to get married someday. We dream of having children, and raising a family. We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do. A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD in mechanical engineering from Carnegie Mellon, and might like to teach someday.
I hope to someday get my master's in speech pathology and work with deaf or special needs children. I also have aspirations of perhaps starting my own business.
I dream of the little things, too. I dream of someday being able to walk down the hallway or outside to stroll in the yard. I dream of being able to take a bath, or even a long, hot shower, instead of a sponge bath. I dream of being self reliant, and not depending on others for help. I dream of being able to call and spend time with my friends and family, and speak for hours about their daily goings-on as we catch up on so many years lost. I dream of being able to read and play with my niece and nephew, instead of just being limited to letters to communicate. I dream of holidays spent with loved ones instead of all alone, as currently I am unable to travel, and my health cannot handle many visitors. I dream of walking, and running, and dancing. Most of all, I dream of the vibrant, glorious feeling of good health. And I strive for it every day.
In the meantime, I watch through my bedroom window as time slips by. The battle goes on.
It is this reason I share all this with you today, so that you can help spread the word that more needs to be done. More needs to be done to raise money for research, so that treatment options or even a cure may be found. More needs to be done to help raise awareness and understanding, so that those with CFS are not made to feel shamed for being ill on top of all else that they go through. More needs to be done to educate doctors, so that patients are not so easily dismissed or mistreated. More needs to be done to change the name to one that doesn't trivialize the condition, and doesn't merely focus on just one of the many different symptoms that come with the disease. The word “fatigue” doesn’t come remotely close to describing what we experience. We are sick, not tired.
Above all, more needs to be done so that those of us stricken with the disease can have our lives back.