10 Things You Didn't Know About Chronic Fatigue Syndrome

Photo: Christine Hewitt

Chronic fatigue syndrome (CFS) is a debilitating illness that can destroy your life. I should know, as it tried to destroy mine. In January 2013, I was forced to quit my job, leave graduate school, and move home with my parents. At my lowest, I was fully bedridden, but I am slowly regaining my health. Most people (including many doctors) have no idea what it means to have CFS (and how incapacitating it truly is). Here are 10 facts that I really wish people understood:

1. CFS is not a rare condition.

I've been told I'm one in a million—but I'm not. According to the Centers for Disease Control (CDC), chronic fatigue syndrome "strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer."

2. It's not a psychological illness.

I am not crazy (though I have been called so by many people, including doctors and family members). Recent research has confirmed that immune disturbances are prominent in those with CFS—meaning it's an illness characterized by physical changes in the body.

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3. Chronic fatigue syndrome an incurable illness, according to the CDC.

Therefore, please don't laugh at me in my efforts to recover—I have already shared my stories on EMF sensitivity and light therapy. I believe every problem is solvable (and I will keep fighting until I find a solution).

4. CFS was recently renamed systemic exertion intolerance disease (SEID).

This is to reflect that the level of fatigue is so severe that it's worsened by exertion of any kind. At one point, simply the act of showering was enough to send me back to bed, as was performing any type of mental exertion. I really wish people would stop assuming that CFS is simply the result of being overworked, overstressed, or in need of a vacation.

5. Even if you have it, you might still look healthy.

According to the CDC, "The majority of people with CFS are affected by post-exertion malaise, which is defined as intensifying of symptoms following physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks." This is why I may appear fine when people see me in public, but in actuality, I will likely pay the price later.

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6. Lab results are generally "normal," but infection can play a part.

This makes it easy to dismiss one's abnormal and debilitating levels of fatigue as being purely psychological. Therefore, trying to convince anyone (especially doctors) that you are truly sick (and not in need of antidepressants) is a seemingly endless, exhausting struggle. I should know—it took me eight months and five doctors to find a single one capable of finding anything wrong with me.

7. Fatigue is rarely covered in medical schools.

Therefore, finding a qualified and competent medical professional capable of successfully diagnosing and treating you is an uphill battle. In September 2013, after eight months of endless tests and doctor visits, I was finally diagnosed with mycoplasma pneumonia by an M.D., Ph.D. Mycoplasma pneumonia is one of the many potential culprits in CFS, with clinical manifestations ranging from self-limiting to life-threatening, from pulmonary to extrapulmonary. Major skills are needed to detect this disease when only extrapulmonary symptoms are present (which I had), as there are no signs of respiratory infection.

8. Lyme disease could be present.

Many patients with CFS also have Lyme disease, but lab tests are falsely negative in up to 40 percent of patients. I should know—my lab tests for Lyme have been falsely negative for over a decade. It wasn't until 2015 (by using alternative methods for diagnosing) that my Lyme disease was uncovered.

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9. Chronic infections will get worse before getting better.

Once treatment begins for any underlying infections, symptoms often get worse before they get better. This is because of die-off (or herxheimer reaction), which is basically when the rate of toxins being produced from killing pathogens exceeds your body's ability to excrete them. Before commencing treatment, my primary symptom was incapacitating fatigue. Once treatment commenced, my symptoms worsened to a whole new level: burning joints, migraines, nausea, chills, brain fog, severe hypotension, kidney pain, and more. Basically, to move one step forward, you have to move 10 steps back and crawl your way out. And once you reach a new level of health, you have to repeat the process all over again. Oftentimes, the more severe your immune impairment, the more intense the suffering you must go through to get well.

10. Even though the long-term prognosis is poor, the condition is not unbeatable.

I should know—I have been fighting to beat this horrific illness for over four years now (and I am succeeding). To end on a positive note, I recently had a full, eight-hour day with friends and did not end up in bed and on the floor. Although I did experience flu-like symptoms for approximately 12 hours post exertion, I have come a long way compared to where I started—and truly believe the end is near.

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