These questions were still unanswered as I tried to compose myself in the presence of the intruder. It was a time when many dreams tumbled over each other in the rush toward reality, and I thought I was in control of most aspects of my life. I was married and madly in love, college was behind me for a while, and I had just given birth to my first child.
Then, out of nowhere, this intruder arrived, unwelcomed and uninvited. It barged in, settled at the center of my space with undeniable permanence, and made itself at home. I had two options: I could stop all activities and focus my energies on trying to evict it, or I could rearrange my life until it finally decided to leave. I tried getting rid of it, which left me exhausted, frustrated, and depressed. Though this option proved futile, the process revealed critical information, such as the name of this unwelcomed life guest. I hope that someday my story will have a fairy tale ending and I’ll “live happily ever after.” But until then, my survival means I have to live with the intruder.
Can you imagine living with a health disorder that is little-understood by doctors, often thought to be a figment of your imagination, yet affects almost every aspect of your life? While baffling the medical world, Chronic Fatigue Syndrome (CFS) has wreaked havoc in the lives of more than half a million North Americans (statistics are not available for other continents), with 70 to 80 percent of them being women. CFS does not discriminate by race or ethnicity. It is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the United States it is often called myalgic encephalomyelitis (ME). The Centers for Disease Control and Prevention defines CFS as “a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and postexertional fatigue lasting more than 24 hours.”
I was diagnosed with Chronic Fatigue Syndrome eighteen years ago and have lived with it for longer. I know first-hand the pain, frustration, and fears associated with its limitations. When I finally learned what it was, I felt bittersweet relief. Finally, someone put a name to what everyone had said was only in my head. To hear the doctor accurately describing my symptoms made me almost want to celebrate. However, that excitement was short-lived, followed by the sobering recognition that there is no cure.
Doctors have come a long way in understanding the physical symptoms of CFS/ME, but here are a few things that sometimes get overlooked:
1. Looking great but feeling bad
The absence of common indicators of illness, such as fever, rash, or swelling, sometimes makes observers think a patient is lazy or faking it. Those who do believe you may suggest simple “solutions,” ranging from more rest and exercise to positive thinking. These may help slightly, but having onlookers reduce one’s suffering to a “minor inconvenience” can be irritating. The patient feels the need to convince the onlooker but feels even worse at the unspoken response: “Yeah, right, it’s all in your head.” CFS patients need acknowledgement of reality, not pity. These suggestions may help you take control on bad days:
• Accept that you are not feeling well. Sometimes we push our down-side to match our up-side, and sooner or later we are upside-down. Don’t give in to the idea that it may just be in your head; trust your intuition.
• Pace yourself based on how you feel, not on how others think you should be feeling. Sometimes short siestas between activities will give enough energy to complete a project.
• Accept your limitations. The fact that your limitations may be temporary does not make them less real. Do what you can and defer what you cannot.
CFS has often been described as “the lonely plague” because you feel separated from those who care by towering walls of ignorance. You may want to explain your ordeal to those willing to listen, but the wide cross-section of symptoms makes it difficult to paint an accurate picture. It is nearly impossible for someone who has never experienced it to truly understand. Each flare may come with a new combination of symptoms, making life even more challenging. Rattling off long lists of seemingly-unrelated symptoms may make you sound like a hypochondriac. However, we are social beings, and we connect with each other by sharing feelings and needs. Inability to do this will leave you isolated and lonely. I’ve learned some ideas that may be used on up-days by both those who support and those who suffer, to make the journey less isolating.
• Journal your symptoms and feelings.
Writing how you feel allows you to put your symptoms in words without the pressure of being accurate. After doing this for a while, you will feel more confident to express them to a care provider or a friend.
• Raise public awareness. Sensitivity to the needs of CFS patients can be heightened through posters and panel discussions at local libraries, schools, and church groups.
• Find related books and videos and make them available to friends and family members. Hearing the story from someone else usually strengthens the case.
• Ask for help. Many times we are left alone simply because our friends feel helpless, not knowing what they can do. Identify simple ways by which they can offer support.
• Find a support group. Because it is a highly under-diagnosed condition, you may not know anyone else with CFS, but you can find support groups online or through your doctor.
There are days when I am extremely fearful that my vulnerability will be exposed. I try hard to cope and live a normal life, but occasionally I have unwelcome displays of what I try so hard to hide. I remember once attending a meeting and giving a presentation with great confidence. Near the end of my lecture, I suddenly forgot a critical word, then the whole phrase, and then the whole thought eluded me. I panicked! I’d lost my memory and stood helplessly silent as tears trickled down my cheeks. I have never forgotten that day, and ever so often I cringe at the thought of it happening again. Other possibilities that conjure fear include:
• falling due to sudden weakness in your legs
• irritable bowel syndrome (IBS) at the most inconvenient time
• losing your job due to incompetence
• being a lousy mom because of unpredictable mood swings
• losing friends because it takes so much effort to understand your fluctuations
• and the list goes on
As a motivational speaker and minister’s wife, I find it disconcerting to live with an unpredictable illness. However, I have learned to trust God’s strength for me when I am at my weakest. He promised in 2 Corinthians 12:9 that His “power is made perfect in weakness.” Some of my best performances have occurred during a CFS flare, because I had to depend on God wholeheartedly to work through me! Another good thing is that CFS comes in spurts, leaving some symptom-free periods to gather strength and build precious memories before the next attack.
For now, I still live with the intruder. Though I still resent its presence, I’ve learned the art of cohabiting. Though I now see life through a different window, and freedom has a new meaning, it is still my life—the intruder is only a tenant; I am still the landlord.