Reprinted with the kind permission of Toni Bernhard and Turning Straw Into Gold.
By Toni Bernhard
I’m halfway though my fourteenth year of being sick. Recently I’ve found myself saying: “Enough is enough. What’s wrong with me? Why do I feel as if I have the flu all the time?”
My official diagnosis is Chronic Fatigue Syndrome even though I don’t fit neatly into either the Center for Disease Control (CDC) case definition or the preferred Canadian Consensus Criteria (CCC). I don’t have some of the “required” symptoms on the CDC and the CCC lists, and I do have other symptoms that aren’t on their lists. This is not an unusual phenomenon. In fact, it’s hard to find two people with a CFS diagnosis who share the same constellation of symptoms.
I know that people can have the same illness without all of their symptoms overlapping, but why have I yet to find even a single person whose symptoms are identical to mine? In my opinion, it’s because people who suffer from different illnesses that medical science has yet to isolate have been lumped into the one designation: Chronic Fatigue Syndrome.
If this is correct, it means that when a study is conducted on those who’ve been given a CFS diagnosis, researchers aren’t looking at people who have the same illness. No wonder studies tend to yield little valuable information. And no wonder when a research study does appear to show something significant, it’s rarely able to be replicated in another study of people with a CFS diagnosis.
If Chronic Fatigue Syndrome is, indeed, several discrete illnesses—or even discrete subsets of the same illness—until these illnesses or subsets are isolated from each other and studied individually, little progress will be made toward finding effective treatments or cures.
Since there’s so much confusion over what Chronic Fatigue Syndrome is, the logical response would be to increase research funding. Unfortunately, the opposite has happened. Research funding for CFS is near the bottom of the heap. Two examples: it receives a fraction of what is allocated for allergy research and even for male pattern baldness, despite the fact that CFS can leave people unable to work and, in many cases, bedbound. I had to give up a productive career due to this illness. Who is forced to leave the workforce due to male pattern baldness?
One reason that so little research money is allocated to CFS is that the illness isn’t taken seriously by much of the medical establishment. The American Academy of Family Physicians recently put out a Patient Information Sheet on Chronic Fatigue Syndrome that described it thusly:
“Chronic Fatigue Syndrome is a disorder that causes you to be very tired.”
Whoa. Very tired? I’m not even tired. I’m sick. (I wrote about this travesty in “Another Blow to Chronic Fatigue Syndrome Sufferers.”) How can we expect CFS to be taken seriously as an illness in dire need of research funding when its sufferers are described as “very tired”?
Today, the preferred name for the illness among most CFS patients and advocates is not Chronic Fatigue Syndrome, but ME/CFS (ME standing for Myalgic Encephalomyelitis). Even the U.S. Department of Health and Human Services now officially uses the designation ME/CFS. However, ME/CFS is not among the diagnostic codes on my doctor’s list. In fact, it’s only recently that there’s been a diagnostic code for Chronic Fatigue Syndrome. Before that, my doctor had to categorize me under this inaccurate and misleading code: “Fatigue, other.”
He apologized to me about it, but explained that he had no other choice if I wanted my appointments, lab work, and prescriptions to be covered by insurance. It was never an issue between the two of us because he’s always known how sick I am, but what did other doctors think when they saw my illness categorized as “Fatigue, other”?
Sadly, I know too well how some doctors respond to the word “fatigue.” I wrote about it three years ago in “The Stigma of Chronic Fatigue Syndrome.” And just a few months ago, my husband was sitting next to a therapist at a wedding reception. The conversation turned to why I wasn’t there. When my husband said I had Chronic Fatigue Syndrome, the therapist said, “Oh, I thought that was all in a person’s head.” (Thankfully, my husband keeps a copy of my first book in his car and gave it to this fellow.)
The next day, when he told me about this interaction, I thought: “I’ve been sick for 13 1/2 years, and some medical professionals still think this illness is all in my head.” It was a disheartening moment. No wonder many people avoid the phrase “Chronic Fatigue Syndrome” when telling people about their illness. They’ll say they have a neuro-immune disorder or a hormonal-immune dysfunction.
I usually tell people that I came down with a serious a viral infection in 2001 and never recovered. If they ask more questions, I tell them that the virus compromised my immune system in some way, causing it to be dysfunctional. And yet, I always feel bad when I avoid using the designation Chronic Fatigue Syndrome, even though I know I’m doing it to protect myself from the possibility of an insensitive comment. I feel as if I’m undermining the tireless work of the patient-advocates for this illness, many of whom are forced to engage in advocacy from their beds.
Oh, and speaking of name confusion, I do not suffer from “chronic fatigue,” although it’s a phrase commonly used—even by those whom people with an ME/CFS diagnosis have worked hard to educate. Chronic fatigue is just that: feeling tired all the time. It can have many causes. It’s often one of the symptoms of other debilitating illnesses, such as multiple sclerosis or rheumatoid arthritis or cancer. Chronic fatigue can also result from a person’s lifestyle, such as consistently getting too little sleep or engaging in poor eating habits or being under constant stress. Chronic fatigue is a symptom, not an illness.
Meanwhile, the years keep ticking away for me and millions of others who are similarly sick. I don’t like to compare illnesses, but the well-respected ME/CFS expert Dr. Nancy Klimas did, so I feel comfortable sharing what she said. This is from the New York Times of October 15, 2009:
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My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V.
For the most part, I’ve accepted that the diagnosis I’ve been given does not adequately describe my symptoms and that, to the extent it does describe them, the reason why I suffer from these symptoms remains unexplained.
And yet, despite this acceptance, right now, for some reason, I want to know what’s wrong with me. Why am I so sick? Why am I diagnosed with an illness that contains the word “fatigue” even though I’m not tired? Why would I be labeled as depressed in some countries (and by some doctors in the U.S.), even though I know (and my GP agrees) that I am not in any way, shape, or form depressed (or a hypochondriac for that matter)?
Bottom line: I don’t know what’s wrong with me, but I’d sure like to find out. Unfortunately, that won’t happen until the medical establishment gives this devastating illness the attention it deserves.
I’m done with my rant. I can’t say it’s made me feel better. I can only hope that it will make those of you with ME/CFS or any misunderstood diagnosis feel less alone in your frustration, and that it might—just might—reach some people who have the ability to influence research funding.
© 2014 Toni Bernhard
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her new book on chronic pain and illness will be published in the Fall of 2015. Before becoming ill, she was a law professor at the University of California—Davis. Her blog, “Turning Straw Into Gold” is hosted by Psychology Today. Visit her website at www.tonibernhard.com.