Am I Crazy? Understanding the Mind-Body Connection in CFS/Fibromyalgia

Used with permission—"From Fatigued to Fantastic!" (Penguin/Avery 2007)

In medicine, we have a bad habit. If a doctor cannot figure out what is wrong with the patient, the doctor brands that patient a "turkey." Imagine calling an electrician because your lights do not work. The electrician checks all the wiring, can't find the problem, and says, "You're crazy. There's nothing wrong with your lights." You flip the switches and they still do not work, but the electrician just says, "I've looked. There's no problem here," and walks out the door. This is analogous to what many CFS patients experience. I apologize for the medical profession's calling you crazy just because we cannot determine the cause of your problem. It is inappropriate and cruel.

Fortunately the CDC (Centers for Disease Control), one of the major governmental agencies responsible for CFS (and other) research, is spending millions of dollars on advertising to dispel the misconception that CFS is all in your mind. They are working hard to teach both doctors and the public that CFS is both a very physical and devastating illness. Hopefully, getting help will be easier in the future.

Research has proven that people with CFS vs. those without CFS have similar rates of psychiatric disorders.¹ What you have is a very real and physical illness. And, like most other physical processes—such as diabetes, heart disease, cancer, and ulcers—it has an associated psychological component.

What Are Some of the Psychological Issues Sometimes Seen in CFS and Fibromyalgia?

In my practice, I frequently see CFS/FMS patients who seem to be caught on the horns of an emotional dilemma. These patients find themselves in situations in which they are unable to make a choice between two or more alternatives—for example, between working and having children, or between staying with or leaving their spouse. These conflicts come in an infinite variety and defending yourself against acknowledging a conflict can sap your energy. In my experience, when people start to feel better physically, they find it easier to deal with their emotional issues. However, you do not have to resolve every conflict. If you have something that you cannot settle at the moment, you might find it helpful to simply acknowledge the conflict instead of suppressing it. Tell yourself, "Yes, I have these two areas that are in conflict, and I cannot reconcile them now." Many people find that after a while, when they are no longer stressed about a problem, a solution comes from a new perspective.

Other people have been convinced that who they are and what they feel and want is not OK, and they tie themselves into emotional knots trying to find a way to get permission to be themselves. For those of you suffering under the illusion that you are not OK, let me put out a simple proposition. If you are not directly harming another person or severely harming yourself, whoever you are and whatever you want to do or be is simply and inherently OK. It might also help you to understand that you may sometimes mistake uncomfortable feelings such as disappointment or sadness for fatigue. Try to be aware of when you do this. There is no such thing as an inappropriate feeling. You have the right to feel whatever you feel. Does this mean that you are crazy? No. It simply means that, like all human beings, you have emotional issues to deal with as part of your growth process.

Unfortunately, some patients become so frustrated by being told their CFS/FMS is "all in their head" that they are in a catch-22. They feel that if they acknowledge that they also have emotional issues just like everyone else, they are validating the ignorant doctors who say that their illness is all emotional. Rest assured, however, that the research study done at my research center, along with research performed at the CDC and elsewhere, also further proves that CFS/FMS are very real and physical. In my study, people who received the active therapy improved dramatically and those receiving placebo did not. Chronic Fatigue Syndrome and Fibromyalgia are real, physical diseases. If it was "all in your head" the placebo group would have improved as much as the active group. This means that anyone who says it's all in your head is no longer simply a nitwit. Now they are an unscientific nitwit! Give yourself permission to be human. You are no more and no less crazy than anyone else.

A large percentage of CFS patients are type-A overachievers who were driven by having low self-esteem as children. In the first part of their lives, these patients needed to overachieve for their growth and self-image. Although not the easiest method, CFS helps them slow down long enough to reclaim themselves. For many, a period of deep rest is essential. Although devastating, CFS actually serves many patients well.

Part of getting well is "lightening up," after all. There is a traditional Zen metaphor of this truth that imagines "worry" as an old man carrying a load of feathers which he thinks are rocks. Like this old man, we can often become weighed down by "rocks" of our own imagining. Many of the worries we carry around sort themselves out as soon as we let go of them. Although things may not always work out the way we would like them to (CFS patients are often describe themselves as "control freaks"), they usually work out for the best. Because of this, it helps to have or reclaim a sense of humor.

I am a firm believer in psychological counseling—if and when you feel like it would be helpful. This is especially pertinent in CFS/FMS. As many as 70 percent of you have suffered physical or emotional abuse—as opposed to 15 percent of "healthy" people.² Counseling is helpful for anybody who is growing and changing. People who are growing frequently come across areas that are difficult and with which it is usual and natural to need help. As is true for any disease, when you address the physical component, you must also address the underlying psychological issues. If you do not, the disease will simply manifest itself in another way.

Although 1/8 of CFS patients also have depression, only a small minority have depression as the cause of their fatigue. The "depression" caused by CFS/FMS is often simply frustration and stress. This gives you a simple way to distinguish whether you also have depression. CFS/FMS patients usually have a lot of interests and are frustrated by their lack of energy. However, if you have depression that causes fatigue, you probably have few interests. I discuss ways to lift depression, naturally and with prescription drugs, in my article "Eliminate Depression—Naturally!"

Whether or not you are depressed, you may consider some type of therapist for emotional support and guidance. Be careful who you choose, however. Many therapists have never dealt with their own problems and simply work out their personal conflicts and issues on their patients. Others have worked through their issues and are excellent with patients. Make sure "psychotherapist" is one word—not two! Talk to your friends and relatives to find somebody who is good. Your physician may also be an excellent resource. There are many good therapeutic approaches, but my own personal bias is for a therapist who takes a transpersonal psychology or Jungian approach. I recommend the services of the Rev. Bren Jacobson (410-224-4877) who does excellent and reasonably priced counseling by phone. By using your Chronic Fatigue and Fibromyalgia as a springboard for personal growth, you can find your CFS turning into a blessing. I found this to be the case for me. My CFS/FMS gave me a firsthand understanding of the problem and a powerful incentive to learn how to overcome it. It also has led me into wonderful areas of growth.

The Mind-Body Connection

All illnesses have a psychological component. Although the highly stressed executive may have a bacterial infection such as Helicobacter pylori or excess acid causing his or her ulcer, it helps to remove the three telephones from his or her ear while addressing the infections and excess acid.

I find that I, and most people with CFS/FMS, are mega-type-A overachievers. As a group, our sensitivity and intuitive abilities are high. We often had low self-esteem as children and tended to seek approval, sometimes from someone who simply was not going to give it. This, combined with our sensitivity to the feelings of others, caused us to avoid conflict and to try to meet other people's needs—at the expense of our own. Many of us closed off our feelings and our empathic nature for a while because we were too young to handle their intensity. Because of our approval-seeking and low self-esteem, we often drove ourselves to being the best at what we did, or to try to be all things to all people. Not being able to say no because we wanted to avoid conflict or loss of approval led us to feel as though we could not defend our emotional boundaries, and left us feeling drained. We responded to fatigue by redoubling our efforts, instead of resting, as our bodies tried to tell us to do. As we depleted our energy reserves—sometimes while feeling great on an adrenaline "high"—we encountered the physical trigger to our disease ("blew our fuse"), whether it was an infection, an injury, childbirth, or something else. This trigger, combined with physical problems such as yeast overgrowth or hormonal deficiencies and, often, a genetic tendency to the disease, set the process in motion.

What Can We Do About It?

First, we can recognize that all this helped us to grow and achieve. One of the fun parts of working with people with CFS/FMS is that they are very intelligent and inquisitive. People with diabetes, high blood pressure, or even cancer, don't usually come in having done a computer search on their illness. CFS/FMS patients often have. It is great to work with patients who can teach me, as well as allow me to teach them.

CFS/FMS forces us to take care of our needs first. After all, you don't have much of a choice when taking a shower uses up all of your energy for the day. Taking care of yourself first is an important lesson for you to learn and to continue, even when you get well. Start by easing up on yourself. It's okay to recognize that you tend to be a perfectionist and a maybe even a bit controlling. But we also beat up on ourselves by feeling that we're never quite good enough. I find it very helpful to begin with the following prescription:

• No blame.
• No fault.
• No guilt.
• No judgment.
• No comparing yourself with other people.
• No expectations.

This applies to yourself and others. It is okay to feel anything you feel. Whatever you feel is totally valid. Own your feelings as your feelings, however, and recognize that they may not have much to do with the person they are directed at. Feel the feelings, then let go of them. Don't blame the person you're feeling them toward. Don't feel guilty or blame yourself (or others) for anything—this includes not feeling guilty when you catch yourself blaming someone else!

In the beginning, you may catch yourself blaming, finding fault, judging, or laying a guilt trip on yourself and/or other people hundreds of times a day. This is normal. When you catch yourself doing it—even if it's three days later—just drop it in mid-thought. Don't beat yourself up for it. Just recognize that it's an old pattern that you have decided to change. Over the next few weeks, it will happen less and less. Eventually, it will be uncommon. Even then, when you catch yourself blaming, feeling guilty, making comparisons between yourself and others (or comparing two other people), simply gently let go of it—without blame. Doing so allows your whole view of reality to change.

What happened? When you were judging others, you were in truth judging yourself and projecting it outward. These judgments were often views and expectations that had been placed on you by others, such as your parents, school, religious institutions, or society. Most likely, this happened early in your life and you internalized it. By letting go of blame, fault, comparisons, guilt, and judgment on others, you stop judging yourself. Hence the truism, "Judge not, lest ye be judged" (being a good Jewish lad, I get to know these lines). When you release these old expectations/programs, that's when the fun can begin.

Once you have done this, use your feelings (not your brain) to figure out what you want. Although our minds are wonderful tools, they are too subject to outside programming to know what we want. Your feelings know, though. If something feels good from a centered place when you picture or do it, it's probably what your inner self (whether you call it your psyche, soul, or whatever) really wants to do and be. If it feels bad, then you don't want to do it, no matter how much your brain is saying you should. Stop "shoulding" yourself! Instead, as you start feeling better with therapy, use your energy to do the things that feel good. Because of your CFS/FMS, you've likely managed to survive not doing most of the things that feel bad for years, without being arrested or thrown out on the street. Let those things stay undone. Pace yourself as you add in the new things that feel good and check with your feelings frequently. Don't make up for lost time!

One day, a friend of mine, Jeffrey Maitland, Ph.D., sent me an article entitled "Stone Agers in the Fast Lane." In it, he gives a very well thought out discussion on how certain psychological patterns can lead to CFS/FMS. I was really ticked off because he beat me to the punch. On the other hand, I knew he was brilliant because he had independently come to the same conclusions I had! In addition, for more information on psychologically getting from where you are to where you want to go, I invite you to read my book "Three Steps to Happiness! Healing through Joy" (now in e-book format).