Writing With Chronic Fatigue Syndrome

Chronic Fatigue and Immune Dysfunction Syndrome (also known as CFS and CFIDS) is a debilitating illness. I should know I have it.

More than four million people in the United States suffer with it. It destroys once healthy individuals, ends careers, and splits up families. The Center for Disease Control (CDC) reports that more people suffer from CFIDS than MS, lung cancer and AIDS altogether. Yet it is an often an unrecognized illness by people and doctors. Here are the criteria for this devastating illness:

1. Incapacitating fatigue for over six months without feeling refreshed after sleep and with no other discernable reason

2. Issues with concentration and short-term memory

3. Flu-type symptoms such as achiness, tender lymph nodes, sore throat and headache

4. Continued fatigue and worsening of symptoms after physical or mental exertion which requires recovery time

These are the main diagnostic criteria; however there are a multitude of other additional complicating symptoms. These vary from person to person and fluctuate per person. It is an illness that does not discriminate. It's a complicated illness to diagnosis and treat but also to live with. If you get treated quickly, your chance of recovering is greater. By treatment I mean, dealing with the symptoms of the illness. There are no known cures.

Early diagnosis is a quandary for both patient and doctor, especially for those not aware of the illnesses existence in order to question their doctor about it. Another reason is because doctors are still not educated about it. Also there is no diagnostic test available and a gamut of other syndromes and diseases must first be excluded in order to arrive at a CFIDS diagnosis. This takes a great deal of time.

My onset of symptoms began when I was in my early twenties going to college. I went to multiple doctors in various areas of expertise. They all said I was overweight and overworked. The severity continued to increase until I later lost my job and ended up in a hospital emergency room with an enlarged liver and spleen and a diagnosis of mononucleosis and Epstein-Barr virus.

A combination of viruses, not necessarily including Epstein-Barr, is being studied as a culprit for this illness. Unfortunately because of the name and not having a specific diagnostic test, funding is not as supported as with other auto-immune diseases like MS or AIDS.

I was forced by this illness to give up a successful career as a computer programmer/analyst and became totally bed-ridden for a period of time. Over the years I have mourned the loss of who I once was, but I have learned to adapt the best I can. Although I always had a love for writing, I began writing from bed when all I could do was move my hand across a sheet of paper. I started with short stories and magazine articles and worked my way up to a fiction novel.

My favorite stories have always been romantic suspense, so I decided on it to write. Writing has proven challenging but also rewarding. I can work at home and at my own pace so as not to bring on a flare-up of symptoms. I am unable to meet writing deadlines or do book tours, but I have found a good publisher who works well with me.

As a writer, here are some of the challenges I face:

- Cognitive issues. Have you ever experienced not remembering a word or forgetting how to spell it? I just did that with the words gamut, vary and existence. This is frustrating when I graduated with honors and a 3.98 grade point average. A few hours later, the word might just roll off my tongue.

- Short-term memory issues. The inability to retain information is a big issue. I hear valuable information that pertains to my book but I can't remember it long enough to write it down. After finishing my second book, the book cover artist called me and asked me specific questions about my characters and facts in the book. I had to read my book and call him back.

- Repetitive issues. Fatigue and brain fog causes me to repetitively type the same word without knowing it. Also, I substitute one word for another.

- Physical symptoms. Lying, sitting or standing for any length of time is hard. I must take frequent breaks when typing. If I work too long, it can send me into a relapse and I will be bedridden for days or even weeks.

- Sensitivity issues. Light from the computer screen can be painful. Headaches, eye pain, and dry eyes are common problems and are aggravated by continual computer use.

- Lowered immune function. Because my immune system is in a weakened state, I tend to catch the majority of bugs going around. This can further aggravate my symptoms, and it might be months before I can write again.

There are a host of other mental and physical symptoms associated with this disabling illness, but for me these are the biggest challenges I face as a writer. Writing gives me the chance to escape my ravaged body and mind and live pain-free through my characters.

Laura Hillenbrand who wrote Seabiscuit is another author who suffers from CFIDS. She has been an inspiration to me and many people fighting this debilitating illness. I hope to be an inspiration to other challenged writers and those suffering with this illness.