The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)
On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.
There's another form of cardio that works much the same way, though it affects the emotional heart rather than the one made of auricles and ventricles. This workout consists of deliberately cultivating empathy. To empathize literally means "to suffer with," to share the pain of other beings so entirely that their agony becomes our own. I know this sounds like a terrific hobby for a masochistic moron, but hear me out.
The reason to develop a capacity for empathy, and then exercise it regularly, is that only a heart strengthened by this kind of understanding can effectively deliver the oxygen of the spirit: love.
Exercise One: Learning to listen
Once a day, ask a friend, "How are you?" in a way that says you mean it. If they give you a stock answer ("Fine"), repeat the question: "No, really. How are you?"
You'll soon realize that if your purpose is solely to understand, rather than to advise or protect, you can work a kind of magic: In the warmth of genuine caring, people open up like flowers. You'll be amazed by the stories you'll hear when you use this simple strategy with your children, your next-door neighbor, your aunt Flossie. You'll learn things you never knew you never knew.
...to achieve high levels of fitness, focus once a week on the story of someone who seems utterly different from you.
Exercise Two: Reverse engineering
Some mechanical engineers spend their time disassembling machines to see how they were originally put together. You can use a similar technique to develop empathy, by working backward from the observable effects of emotion to the emotion itself.
Think of someone you'd like to understand -- your enigmatic boss, your distant mother, the romantic interest who may or may not return your affections. Remember a recent interaction you had with this person -- especially one that left you baffled as to how they were really feeling.
Now imitate, as closely as you can, the physical posture, facial expression, exact words, and vocal inflection they used during that encounter. Notice what emotions arise within you. What you feel will probably be very close to whatever theother person was going through.
Exercise Three: Shape-shifting
In folklore, shape-shifters are beings with the ability to become anyone or anything. As a child, I was fascinated by this concept and used to pretend that I could instantaneously switch places with other people, animals, even inanimate objects. What if I woke up one morning in the body -- and the life --of my best friend, or a bank robber, or the president? What if, like Kafka's fictional Gregor, I suddenly became a cockroach? (You could find people who think I've actually done this.) My point is, what would it feel like to be them? How would I cope? What would I do next?
I still play this game, especially in public places. I recommend you try it, soon. See that strange man in the orange polyester suit putting 37 packets of sweetener into his extra-grande mochaccino with soy milk? What if -- zap! -- you suddenly switched bodies with him? What would it be like to wear that suit, that face, that physique? What impulse would lead to sugaring a cup of coffee like that, let alone drinking it?
I can feel this shape-shifting developing my empathy.
Regular empathy practice keeps you on the edge of your emotional fitness, but the benefits are enormous: an awareness of union that banishes loneliness, a natural ability to connect and relate to others, protection from idiot compassion, a wider, deeper life.
By Martha Beck from "O, The Oprah Magazine," March 2006
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Doctors should practice empathy more often. Instead of interrupting after 18 seconds, as documented by Dr. Groopman, or playing what Dr. Bell calls Game Show Medicine, where the quick answer is supposedly better than the right one, they should sit and listen with the heart.
If you were a healthy active person who had overnight been rendered bedridden by a virus, and no doctor could get you back to work, how would you feel? Frustrated? Don't mistake frustration at the limitations of Modern Medical Science for symptoms caused by depression. Listening to the patient instead of substituting your own pre-conceptions will be of more use.
Doctors who think they know better than the patient what the patient's symptoms are run the risk of malpractice suits when the patient gets worse as a result of erroneous treatment.
Psychiatrists verify that I am not depressed and are not surprisedthat unnecessary anti-depressants make me sicker; they're trained to listen and they heard loud and clear that I was describing a physical illness; but the doctors seem to forget that a psychiatrist has an MD degree, too, and is fully qualified to say "sounds like flu or virus" because they've studied flu and virus just as much as any other MD.
It took a doctor who listened with the heart instead of leaping to conclusions to figure out that I threw up every morning because I didn't eat at night: I'd eat dinner around 5 PM and promptly collapse into bed, too exhausted to get up again. For more than 12 hours, my stomach acid had nothing to work on but my stomach. Why didn't the other doctors realize I was throwing up stomach acid? Because they "knew" depressed insomniacs gorge themselves at 3 AM and purge at 6 AM, therefore they didn't ask what and when I was eating.
Rather than reading this blog with an eye toward making snarky comments, read it with the idea of developing empathy toward the millions of people around the world with CFS and fibromyalgia. The patients know there's a ton of evidence that they are biological illnesses, and deal with the verbal abuse from people who haven't read any of the medical journal articles, but think they "know" all about it anyway. Put yourself in our shoes. Empathize with the problem that we're sick and many doctors can't be bothered to read the research that would help us, and the things they do make us worse.
Someone recently told me "limit your advice to the things you know about". I'd make the same suggestion: if you don't know the patient personally, if you haven't read the medical journal articles about CFS, then refrain from giving your worthless opinion. I've had one-on-one communication with several doctors and psychiatrists who are CFS experts and have studied the disease for decades; the information I get from them is a lot more valid than what I get from people who haven't read the research but "know" it's just laziness or depression or hypochondria and assure me that I can be cured by exercising more and getting counseling -- two things the experts say are not as beneficial as people think.
If you haven't spent years lying in bed because you fall down when you stand up, you don't understand what CFS is like. The best you can do is, next time you have the flu, imagine what it would be like to be 10 times sicker 100 times longer; we have patients who haven't been out of bed for years or can only get out of bed if a family member lifts them to a wheelchair. Maybe that will develop some empathy on your part.
Too many facts, and too few people with an understanding of what they really mean, because they're listening with their hearts and minds closed, instead of open. It's easier to criticize than to empathize and it's easier to cling to wrong ideas about CFS than to accept that your opinion is wrong. But you would do yourself, and the patients, a lot more good to open up and let some fresh air in, by accepting that with 5000+ studies showing an objective biological basis for CFS, there's ample evidence that the patients who say they are really sick are telling the truth, and there's no longer any room for verbal abuse in the way those patients are treated by either doctors or laypeople.