Elizabeth Richardson blamed her fatigue on the stress of school and planning her wedding. Newly married, out of school, and unemployed, she was too tired to get dinner on the table every night. After her daughter was born a few years later, 27-year-old Elizabeth was so exhausted she was unable to function. Doctors brushed it off as typical post-partum fatigue common to new mothers. But when her energy level hadn’t returned a year later, her doctor ordered extensive lab work. When high levels of the Epstein-Barr virus showed up, Elizabeth was referred to an internist who specialized in chronic fatigue syndrome (CFS).

Besides the CFS diagnosis, Elizabeth also has Type 1 diabetes, hypothyroidism, and severe allergies. Ninety-five percent of the time she is so tired she feels like she could crawl into bed and sleep for a week straight. Her muscle aches hinder her physical activity and instead of revitalizing her, exercise actually makes her more tired. Her brain works slowly; she forgets things easily and reads so slowly that it takes her at least 30 minutes to write a four-sentence thank-you note.

The illness also wreaks havoc on her emotional state. She is depressed, irritable, and lonely because she has neither the time nor the energy to develop relationships. She suffers from a profound sense of anxiety. “I worry that I am not being a good mother for my daughter; that I don’t interact with her enough even though I am at home with her all day long, that I am not providing a good example of godly living,” she explains.

She also worries that her little girl will end up with some of the same health problems she has. While her husband is faithful and supportive, she worries that one day he’ll decide she’s too difficult to live with and move on. Elizabeth’s biggest fear, however, is that one day they won’t be able to afford the medical treatment she needs.

Chronic fatigue syndrome is a debilitating disorder characterized by profound fatigue. In the words of one patient, “Extreme fatigue does not cover it. That’s like saying it’s raining without acknowledging the flash flood warnings.”

More than one million Americans have chronic fatigue syndrome. Relatively mysterious, the illness strikes more people in the United States than multiple sclerosis, lupus, lung cancer, or ovarian cancer. Yet research conducted by the Centers for Disease Control and Prevention (CDC) indicates that less than 20 percent of CFS patients in this country have been diagnosed. Women are four times more likely to have CFS than are men and it most often afflicts people in their 40s and 50s. At least a quarter of them are unemployed or on disability due to their symptoms.

In order to receive a diagnosis of chronic fatigue syndrome, a patient must have severe chronic fatigue for six months or longer. She must also have four of these eight characteristic symptoms:

• relapse of symptoms after physical or mental exertion

• unrefreshing sleep

• substantial impairment in memory and concentration

• muscle pain

• pain in multiple joints

• headaches of a new type, pattern, or severity

• sore throat

• tender neck or armpit lymph nodes

In addition to these eight primary defining symptoms, there are a number of other commonalities among CFS patients: abdominal pain, gastrointestinal irregularities, bloating, chest pain, chronic cough, dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, shortness of breath, skin sensations, tingling sensations, and weight changes. Many CFS patients also struggle with depression and anxiety.

CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, or congestive heart failure; yet there are no specific diagnostic laboratory tests for it. Instead, diagnosis is usually a process of elimination.

Suffering from chronic fatigue syndrome can impact one’s life from every angle. The illness has caused major problems for Christina Gombar—financially, emotionally, and in her marriage. Always super-healthy, super-athletic, and filled with boundless energy, her life has made a dramatic 360 degree turnaround since she was diagnosed with CFS. “It took me years to get used to being this new person who has to lead a much quieter, less productive, and much less financially secure life. Some of my friends have never accepted this. I lost two best girlfriends, who, like me, had been hard-driving do-it-all people.” Now unable to work, she has been on long-term disability for almost 10 years. CFS has been a hardship on her marriage as well. “My husband married a dynamo and has never fully accepted the downscaled me.”

The biggest loss for Christina, now 49, is that she was unable to have children. Her health and financial situations made it nearly impossible; in order to afford children she needed to work full time, but doing so made her ill.

Cynthia Trench’s life also changed forever when she was diagnosed with CFS. Now the Encouragers’ Club Coordinator for Rest Ministries (www.restministries.org), a non-profit Christian organization that serves people who live with chronic illness or pain, she is no longer able to participate in the activities that once bonded her with her husband and children. “This illness took away the woman my husband married. It was like a death for both of us. I can no longer work; I do limited household chores—if I’m not exhausted from my morning shower. I can no longer shop or cook.”

For many CFS patients, the lack of support from loved ones who barely acknowledge the reality of the affliction is as painful as the illness itself. Unfortunately, the church isn’t doing much better. While the faith community is good at ministering to those who are grieving or have diseases like cancer, many ignore invisible illnesses like CFS. But CFS is a real, complex illness that has both physical and psychiatric manifestations; it is not just depression or anxiety.

Cynthia Trench has often felt ostracized by other Christians. “Many in church were just plain hurtful about my illness.” She says, “But God has taught me to take the comfort from the hurts I have been given and share that with others.” Many leave church hurt, their faith battered, and in order to hold on to what faith they have left, they avoid the church that brought them discouragement.

Trench often refers to people like herself as ‘the culture of the unhealed.’ She says, “We’re the dirty little secret of the church family, especially when God’s healings in the congregation are constantly touted from the pulpit and classrooms without the compassion to look at long suffering and how to live life in the difficult path God has chosen for us.” A woman once suggested that Trench must not have enough faith to be healed. “I kindly but firmly said, ‘It takes more faith to remain unhealed, but since you don’t think I do then let’s put you in charge of praying for my healing. Let me know how it goes.’”

Even though Christina Gombar was raised in the church, she has explored Eastern religions through yoga because she finds their philosophy to be more forgiving. “Christianity, of course, is supposed to be the religion that reached out to the poor and the lame—but in real life, many Christians tend to be very judgmental.”

Chronic fatigue syndrome is real. It is not a psychosomatic illness or a result of staying up too late and not getting enough sleep. It’s not a case of simply being too lazy to do anything. It can be physically, emotionally, and spiritually debilitating, but there is still hope.

Jennifer Saake has experienced God working in her heart in a number of ways since she was diagnosed. “I’ve had my seasons of anger toward God. I’ve had times where I felt like the psalmist where my feet were slipping into the depths of a slimy pit and my head was going under water fast. But through this 19-year journey, God has worked various themes in my heart, taking me through seasons of waiting, seeking to find balance, searching for hope, and now striving for joy. CFS caused me to grow up into a mature faith, hard fought and wrestled out with a God who would not let me go even when I had given up on myself or tried to turn my back on him in anger.” |L

Helpful tips for interacting with the chronically ill: