Autumn descends on us with all the familiar signs: falling leaves and changing colors, crisp mornings and early evening darkness, light summer fabrics making way for cozy sweaters. Even our bodies embrace a different rhythm. Something instinctual tells us to slow down, nourish ourselves with comforting foods, and overall move at a different pace.
The fall of 1997 began like any other. I was living my life and facing my responsibilities like millions of us do every day: career, home, finances, family, and friends. But I still found time to marvel at the changes around me. I anticipated all it had to offer. I loved the cooler days and snuggling up in my warm clothes. I was excited for the upcoming holidays and being with my family, to whom I have always been close.
The first thing I noticed was a change in my mood and energy. A normally even keeled person, I began to feel frantic. Things bothered me when they never would have before. The weird mood and energy stuck around. Friends suggested it was nothing more than being burned out. Nothing a little rest and recreation couldn’t fix and then all would be well with the world.
Before long I was crippled by fatigue, the kind that sinks deep into your bones and keeps you in bed for days on end. As the months passed, I was overcome with swelling and pain that afflicted every joint and muscle in my body. My eyes could no longer tolerate the sun. I struggled to breathe. I experienced a cognitive fog so severe that I could barely string a sentence together, let alone get through a day of work. I would pick up my hair dryer and for a moment not know what it was. It was not uncommon for me to put a hot coffee pot in the refrigerator, or get in the shower still wearing my bra. This could easily happen to anyone, in one isolated episode of sheer exhaustion. But it was happening every day, all the time. And in a rather scary (albeit amusing) twist, I would not even realize my bra was soaking wet until I went to bed wearing it.
The holidays came and went, and sadly I could not embrace the usual joy of the season. I will never forget New Year’s Eve 1997. I recalled the day in past years, and how I always felt so hopeful and full of life. This time was different. I could only feel fear and dread and it scared the hell out of me. I was in a terrible place. Extreme pain and fatigue kept me bedridden. I was too exhausted to bend my limbs. I could not tolerate food. But being at the time my extremely vain 20-something self, I really panicked when I woke up one morning to find tufts of hair covering my pillows. My thinning head stole what little was left of my beauty. Try dating when you feel this way.
There are a million and one ways to describe pain: stabbing, throbbing, blinding, burning, crippling, dull, pounding, sharp, shooting, pulsing, pressing, tingling, nagging, crushing. I endured each and every one, and then some. And pain is intensely personal. No one can tell you how much you hurt, or understand how badly you feel, how it threatens you, and how it totally obliterates your self esteem and compromises your state of mind.
After months of medical tests, and a frustrating process of elimination, in the summer of 1998 I had my answer: chronic fatigue and fibromyalgia. I realize I was fortunate. I had my diagnosis in less than one year, so many others suffer for years before knowing what is wrong and being taken seriously. But regardless of how quickly I got the answers, it was the moment of truth. Just like that everything I knew about my life no longer applied. I could give up, get caught up in the negative. Or I could fight, embrace the positive and all medical science had to offer me, and get on with living. Unfortunately what medical science had to offer did not amount to much and to this day it still doesn’t. There are mysteries surrounding these two conditions, that most often manifest together. It seems a myriad of potential causes are in play: the environment, extreme stress, physical trauma, viruses. The list goes on and on. In my case, my doctor had a few things to go on. Before the age of 25 I had experienced two very serious car accidents. In the more serious of the two I was rear ended by someone driving at a very high rate of speed. For nearly two years I was disabled, with neck, arm, and back trauma so severe that I required multiple surgeries. Years earlier, as a high school sophomore, I experienced a mysterious bout of extreme fatigue. After countless tests, my parents desperate for answers, we were told it was a viral infection. Eventually I got better and went back to my teenage existence. But with the benefit of hindsight I can look back and definitively say after that I was never the same. Whatever the cause, it didn’t matter. I was afflicted by something that has no known cure. Life became all about symptom management and just trying to get through. The world stops for no one.
I felt all the emotions that come with this kind of news: fear, pain, despair, loneliness, isolation, desperation, anger. Most of all grief for the healthy me. I knew sitting in that office that mercilessly hot, bright day in July that everything would be different. To add to the pressure I was alone and away from my family with commitments in a city far away. A career I loved, no longer meant to be. First thing was first. I walked away from my job and happily it was the easiest decision I ever made. My first assertion of control over a horrendously chaotic situation.
Not everyone has loved ones they can turn to for emotional and financial support. This was my good fortune. But I knew the financial arrangement couldn’t last forever. I looked into every program I could take advantage of to support myself short term, while I sought answers. I respected my body and allowed it to rest. I would only eat highly nutritious foods. I would not indulge in anything remotely unhealthy. I carefully researched the medications suggested to me and only accepted those with few side effects. In the end it wasn’t a pill that made me feel better. Lifestyle changes and a more natural approach to my condition started my healing process.
Knowledge truly is power. And so is believing enough in yourself to know your worth, and anyone who stands in your way does not belong with you on your path to health or any other measure of greatness. I fired doctors who were distant and unsupportive, who were intimidated by my quest for medical enlightenment. As if they only had the right to know anything. I learned that many are uncomfortable with their patients knowing too much. Well, too bad. Never forget, in your relationship with your doctor you are the employer in the arrangement. You are in charge. You come first. Overweening egos be damned.
It is now 2012. I am very much still here. A lot has happened. Through much trial and error I have found a way to manage my illness, enjoy life, and love and be loved. It isn’t perfect. I am reminded every day there are limits. There have been many ups and downs. I have difficulty maintaining a professional identity. I have lost a parent. Friends I valued drifted away when I could no longer keep up with them socially. I understand now that those “friends” did not value me or care to understand me. Those few who remain are true, and I love them for it, more than I can say. I strive to understand and appreciate them in return.
Every day I am under threat of flare. It can be the most innocuous thing that does it. A chilly breeze, a ringing phone, getting caught outside without my sunglasses, even for a moment. An argument with my husband or stress over mounting bills. Life can feel like a minefield.
But as always, there are lessons to be learned in the midst of adversity. I know what is important. A slower pace, quieter life, and a simpler path fulfills me. Sure, there are times when I don’t do the right things. There are days when I work too hard, exercise a little too much (or not at all), say the wrong things, look in the mirror and not like what I see, and eat things that are unhealthy. All we can do is try our best when it comes to our health and everything else life brings our way.
By sharing my experience with chronic illness, I trust some of you out there can find a measure of hope, whether you are personally challenged or love someone who is. I am with you. For the skeptics out there who doubt the existence of what afflicts me and millions of others in this country, I assure you it is real. If you could experience it for even one second you wouldn’t wish it on your worst enemy.
In future writings, I want to share with you what has worked, what hasn’t, what I learn every day about my condition and what we can all do to be happy and healthy. I won’t talk about it all the time, I promise. It is a part of who I am for sure, but it will never define me.