What you label something, or someone, is so important. If you are called lazy then you will likely become lazy. Or, as it has been in my case, you will over-compensate against the lazy label and then become a driven perfectionist who works nonstop. I had this lesson drilled into me very early by good parents who valued hard work done very well. It seems from the biblical narrative that "naming" is truly powerful. This is why God gave this power to human beings in the creation account in Genesis. We share in the work of creation in so many unexplored ways. But sin intervened and now we easily abuse this God-given power to our own harm and that of many others around us.
I thought of this when I wrote about my struggle with Chronic Fatigue Syndrome (CFS) just a few weeks ago. Putting a label on this illness is problematic for many reasons. It can become a way that I actually choose to define myself. This can allow me to excuse all kinds of things. I get impatient with Anita and appeal to CFS as my reason rather than to it being the occasion of my sinful reaction! On and on the illustrations will work to make the same point. Even illness does not excuse our sin! (It does help us understand human behavior in helpful ways. Ask any parent whose child has a disease that impacts behavioral response.)
But what do you do with an illness that is so odd that for years no one even knew what to call it? Some called it the "Yuppie Flu" because they thought it was a flu-like condition in some younger, highly trained, well-off people who were over-achievers and great complainers. I can't tell you how much this label really helped to make things a lot worse. The most common reaction, for many years, was to simply say, "This is something that's in your head." This is a non-medical way of saying that it is all psychosomatic. Again, this is a partial truth. When patients with CFS are treated for depression with proper medication this often helps deal with some of the CFS issues too. There are several good medical reasons for why this is true without one being forced to conclude that the illness itself is simply "in your head." But the brain does have an amazing role in healing. And I have no doubt that what we tell ourselves plays a huge role in our neurology. This field of research is both a new frontier and a brave new world at one and the same time. I have explored its use in treating my own CFS, with terribly mixed results.
Now the study that was first published in the journal Science comes to the front in the naming and re-consideration of how we understand and treat CFS. This study, as I reported earlier, suggests that there may be a retro-virus that plays a major role in the illness. This retro-virus is call XMRV and has long been studied in animals. Infection is permanent and it can be spread from person-to-person but we have no idea how. It is possible that this research could lead to some possible treatment(s) for those of us who suffer with CFS.
What fascinates me even more, however, is the possibility of renaming CFS itself. This name, by the way, is not common. The British have a different name, calling it ME for short. This label comes from myalgic encephalomyelitus, a term that is clearly more medical than the America one. The American establishment decided against this label because it suggested a disease that was "overly complicated and too confusing for many non-medical persons." Thanks folks. The American system sure did us a favor here.
All of this labeling also had to do with insurance. (Makes for interesting discussion about health care in the U.S. and the need for true reform! I became virtually un-insurable, even though my bills actually related to CFS were relatively very small.) If the word syndrome was used because insurance companies chose to see the illness as psychiatric in origin, not as physical. The problem with the name CFS is that it also sounds rather tame and makes people think that you are just fine if you would slow down and rest a bit more. I do not know how many times I have had someone say to me, with very good intentions, "I must have what you have since I feel pretty tired on many days." The reality is that some may but most do not. This response trivializes the illness and makes me feel much worse when I hear this said by people. What I want to say is something like this: "What I deal with every single day is not just fatigue as you know it. It is far, far worse. It is an illness that drains away most of my energy, leaves me in a flu-like state and in general creates a full-body situation that is most like what many cancer patients deal with until the get to the final 'death' stage of the illness." One of the prominent researchers of the viral connection to CFS now calls this disease "X-associated neuroimmune disease." The first part of that name will baffle everyone but scientists but the last part helps. I have a "neuroimmune disorder."
Here is my point about naming and labels. If this new research allows those of us with diagnosed CFS to be treated as having an actual disease this will be a good start on dealing with the emotional implications that labels can bring into our lives. I am helped most by my wife in this struggle because she truly believes that I do have a real illness. If we begin to call CFS a "neuroimmune disease," and thus not just a "syndrome," then we have made huge progress for those of us who suffer. I can actually say, "I have a viral disease that makes me so tired that I simply can't function well on most days. Further, I generally feel disoriented, weak and drained beyond what my words can explain to you." The only coping mechanisms I presently have for treatment are rest, removing stress from life as much as possible, and the support of good friends. Some medications can help with symptoms but none are able to stop the disease.
People who suffer from any kind of mental illness frankly face the same problem I am referring to here. The labels that so many put on these patients are cruel beyond belief, especially in the modern world where science has revealed so much that we did not understand until recent decades. Yet many Christians I know still perpetuate this very problem by their ignorance and, at times, their actual cruelty. Some forms of Christian counseling, so-called, make matters even worse. I sometimes think there ought to be a special place in the judgment for all Christians who dispensed "biblical counsel" in ways that actually harmed people in their journey of faith and obedience. I am sure that bad "biblical" counseling has pushed some to suicide and led many to a real breakdown. I have resisted this bad sub-biblical counseling successfully only because I have used my mind, and my knowledge of Scripture and how to interpret it carefully, to resist this horribly abusive teaching.
So, is CFS a syndrome or a disease? It would appear that the British got it right all along and the American insurance industry and the press got it all wrong. It is increasingly evident that it is a disease. I am personally convinced that there is a psychiatric component to this auto-immune disorder because the
mind-body connection is so c
learly prevalent in so many illness. I am also convinced that one reason this illness strikes certain people has to do with the way they handle extreme stress. We all deal with stress. Some of us do it one way, others another. In my late forties I went through a period of stress covering about three years that clearly had some role in breaking me down and making me a suitable candidate, if I can use that language, for this strange disease.
I will say more about perfectionism, stress, and coping with loss and pain in future posts. The reason I write this now is because I am learning about these things by processing my own illness day-by-day. There is one powerful biblical principle that I see at work in my soul through all of this. Paul states it most clearly in these words:
All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort Christ. Even when we are weighed down with troubles, it is for your comfort and salvation. For when we ourselves are comforted , we will certainly comfort you. Then we can patiently endure the same things we suffer. We are confident that as you share in our sufferings, you will also share in the comfort God gives us (2 Corinthians 1:3-7, NLT).