Eighteen months ago, I was diagnosed with an illness that has changed my existence dramatically, perhaps irrevocably. I remember the May day I woke up in the morning and felt a nagging pain in my lower body. As day turned to night, the pain crept up my back and out my finger tips. Every bone in my body ached, but I thought it couldn’t be more than a little virus or, at the very worst, the flu. I sat at my desk the following morning feeling terrible, brainlessly made it through lunch, but by afternoon I could no longer mask my pain. My feet, hands and arms all went numb, and I curled up into a ball crying out for help. My boyfriend, Brett, who was also my co-worker, was instantly by my side and off we went to the emergency room.

I was panicking inside as my mind flashed back 10 years. I had suffered a mysterious illness in high school during my senior year. I thought I had the flu, but this flu was different—it wouldn’t go away. I constantly felt sick, but was scared to ask for help. I just kept losing weight, so my mom took me to the doctor. He thought I had an ulcer, and that was the problem. I knew in my heart that my illness—whatever it was—wasn’t an ulcer, but I played along, convincing myself I would be just fine.

I did gradually feel better, but never quite the same. I left for college with a bright outlook, but by the middle of my sophomore year the unexplainable feelings of numbness returned. I lay on my stomach for two days before I managed to get myself out of bed to go to the health clinic. They were no help and thought I was crazy. Once again I slowly came out of my funk enough to function again and even graduate a few years later. I was determined to be “normal” in a society that just didn’t seem to accept anything else. I found a job and life was okay. I felt run down and tired a lot and would frequently have sore throats, but nothing I couldn’t handle.

That is, nothing I couldn’t handle until May 2003. As I was waiting in the emergency room, I kept worrying that the doctor was going to think I’m crazy. I was pretty much right. The doctor kept giving me a puzzled look as I tried to explain what I had experienced over the years. He sent me to have blood work done and took a scan of my brain. A few days later, I met with my regular family physician, who had seen me a few weeks earlier for what I thought was a sinus infection. I had been given two different kinds of antibiotics and a shot of cortisone. (Knowing what I know now, those antibiotics and shot of cortisone are probably the worse things I could have put into my body.) He admitted that something was off with my blood work from the ER, but acted like it was no big deal. He signed me up to have a test done at the hospital to look for MS, but told me not to worry. He was sure I would be just fine.

I didn’t look fine and I certainly didn’t feel fine. I missed days of work between May and December. The days I was able to get out of bed and show up often consisted of me sitting at my desk and crying the entire day. People acted like they cared, but they didn’t really understand what I was going through. They just kept saying, “But you look okay.” They couldn’t see that every bone in my body ached, my arms were tingling with numbness, my legs were burning, my head was cloudy, my eyes were blurry. I started wondering if my family, friends and co-workers even believed me. After all, if you can’t see something does it really exist?

One person who did believe in me without any doubt at all was Brett. He wiped my tears when I cried, rubbed my sore hands that couldn’t even form a fist, washed my hair and accompanied me to every doctor’s appointment. One Saturday Brett left my side for the first time in weeks. He told me he had to go run some errands and promised to return in a few hours. What he didn’t tell me was that he really headed off to my parent’s house to ask for permission to marry their daughter. He returned a few hours later with Chinese. Even though I was losing weight every day and could barely eat once a day, I never lost my sweet tooth, and I asked him for a fortune cookie. I opened up the box and there was my ring. I just cried and cried because I knew in Brett’s mind he was already taking me for better or for worse, for richer or for poorer in sickness and in health. He could have run the other way when I got sick, but he chose to stick it out no matter what and loved me regardless of my illness. He let me know this was our problem to battle together, never mine to face alone.

At this time, my family physician finally was at the end of his road with me. After looking for MS, cancer and numerous infectious diseases, he referred me to a rheumatologist, Dr. Gideon. I wasn’t optimistic since no one else had been able to help me or give me any hope. Dr. Gideon listened to me ramble on for about 30 minutes without interruption. He looked me in the eyes and promised me he would find an answer and I would get better. I wanted so badly to believe him, but I will still hesitant.

Dr. Gideon put me through a few more blood tests and confirmed that I had contracted an “Epstein-Barr type of virus” in the past that led to chronic fatigue syndrome. I was confused. I wasn’t a stupid woman, and I knew that this wasn’t about being tired! Like many other Americans, I was totally misinformed about the meaning of the illness and thought he was basically telling me I was lazy. He put me on a steroid for the swelling I had in my legs and gave me Vioxx for the pain. He also gave me Doxepin to help me sleep and the antidepressant Effexor to raise my energy level. None of these things seemed to help. Some—like the antidepressants—even made me worse. But I was willing to try anything.

I liked Dr. Gideon a lot, but was still searching for some kind of explanation, so I decided to go to the Cleveland Clinic. The doctor at the Cleveland Clinic informed me that he didn’t believe in chronic fatigue syndrome, or what he referred to as the “yuppie flu.” He said I just had a virus, and it had to run its course. With little hope left, I went back to Dr. Gideon, and instead of pushing more pills on me, he simply listened while I talked about my frustrations. I ended up visiting him every few months to discuss how things were going while he charted my progress. I soon learned that the psychological aspects of this illness were just as important as the physical. No one seemed to understand what I was going through as much as Dr. Gideon. My friends and family loved me and gave me support, but they had no idea what I was going through. Dr. Gideon would fill my mind with positive thoughts of encouragement, and I would feel alive when I left his office and ready to face the next few months.

I gradually felt better and my wedding was getting closer. I even managed to plan the wedding while I was sick. I learned from Dr. Gideon to keep things as simple as possible for myself and not to sweat the small stuff. I know that many brides-to-be freak out, and I was scared to tackle a wedding, but I managed my priorities in a way that allowed me to stay calm and make simple decisions. I had a beautiful wedding and have been happily married for six months now.

I’m not going to lie and tell you I’m cured and life is wonderful. In fact, every day has its struggles. I continue to have relapses every few months and some are worse than others. In the midst of writing my story to all of you, I became quite ill and was off work for three days. Luckily, I have an understanding boss who gives me time off to rest and get better. I have somehow managed to hold down a full-time job throughout my illness. I know that some people with CFIDS can’t even hold down a part-time job, so I consider myself very lucky to be able to do so.

I do have to constantly listen to my body and follow what it’s telling me. I can’t live my life on high speed anymore without eventually crashing. I have to plan things around my illness and can no longer do some of things I once did. As much as I would like to ignore it all away, my body reminds me this is not an option. I educate myself on diet and exercise to help ease the symptoms. There was a time when I was first diagnosed that I couldn’t even walk around the block; now I can walk three miles at a time. I continue to find encouragement and joy in little things that others take for granted every day.

The hardest part of this illness for me is not to feel sorry for myself. I often ask God, “Why me?” I do have faith, though, and I trust that God has chosen a path for each of us to take through life. This just happens to be mine for whatever reason. I have so many things I’m grateful for, including a wonderful and very supportive husband and great friends and family. I do pray for the day there is a cure, so those who suffer along with me will have the freedom of experiencing a normal existence once again. Until we have a cure, I want to live each day to the fullest and continue to fight this cruel disease.

I wanted to share my own personal story to give others hope. I know there are many people out there who can relate to me and my story. You are the ones who give me strength to continue. Don’t be afraid or ashamed to tell your stories too. Please be strong and know that no matter how bad it may seem at times, you’re not alone!