Of the many myths about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), this is probably the most hurtful: the belief that people with these conditions aren't sick at all, but are just lazy.
I can't count how many stories I've heard about this myth destroying marriages, straining even the closest family relationships and friendships, and destroying the self esteem of the people being falsely accused. It's too often said that we "just don't want to work."
That attitude floors me. I know how hard it was for me to leave my TV news career, and I know how hard I've worked to bring in an income from home. Millions of people with FMS and ME/CFS are in the workforce right now, suffering every day to keep their jobs and bring home a paycheck. Those of us who've had to leave their jobs talk about how hard it is to have a good self-image and how they've had to re-define their very worth as a human being.
Our detractors don't believe in our pain and fatigue because they can't see it. I have to ask, can you see the pain and fatigue of someone with cancer? Late-stage AIDS? Yes, those diseases have better diagnostic tests, but the pain and fatigue are just as invisible as ours.
They tend to think if something was really wrong, we'd have better diagnostic tests. They don't realize that we have a mountain of quality scientific research showing dysfunction and abnormalities in multiple systems: central nervous system, autonomic nervous system, immune system and endocrine (hormonal) system. We know that we can have any combination of the following abnormalities:
- Neurotransmitter dysregulation (low serotonin, norepinephrine and dopamine, high glutamate)
- Abnormal blood-flow patters in the brain
- High activity levels in areas of the brain that perceive pain
- Chronically active immune systems, with elevated cytokines, natural killer cells, RNase L and T cells
- Low levels of stress hormones and dysfunction in the stress system
- Unrefreshing sleep
- Impaired working memory and other cognitive dysfunction
Also, when it comes to diagnostics, they need to realize that neurological illnesses are especially hard to diagnose. Also, to identify infectious agents in the blood, doctors have to know what to look for. How many viruses and bacteria are undiscovered? How many known ones work in ways we don't fully understand? In addition, many of the tests that do clearly and consistently show abnormalities in studies aren't used in doctors' offices because they're too expensive or the necessary equipment is too scarce.
Lazy? Functioning at all with this mess of things going on takes determination beyond what our critics will ever understand. Anyone who's watched one of us push ourselves on a good day so hard that we crash for two weeks should be able to see the drive that we do have to keep going. It unfortunate that some people are too blind and punish us for their own shortcomings.
Some skeptics seem to cling to their skepticism no matter what, and this myth is not one that's likely to die soon. Hopefully, the growing body of evidence will keep making it harder for them to dismiss us as malingerers and will wake some of them up to how hard we work for every single thing we do.
What has this myth done to your life? Your relationships? Your self-esteem? Have you been able to overcome it with someone close to you? Leave your comments below!
Learn more or join the conversation!
- Debunking Myths: Fibromyalgia is Autoimmune
- Debunking Myths: FMS & ME/CFS Are the Same Thing
- Simple Explanations of Fibromyalgia & Chronic Fatigue Syndrome
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