Of additional comfort are scientists such as Sergio Canavero, who are studying how the brain reacts to signals it cannot make sense of by setting off a generalized pain alarm, even if it cannot provide information by which the individual can understand their sense of suffering. It would appear that the neural messages which are responsible for Central Pain are not distinct enough to convey the specifics that pain was meant to give us.

All of the above information is helpful for Central Pain patients, who have been struggling to explain the unexplainable to loved ones and friends, let alone to the skeptics who abound when observing neurologic impairments in other people. There is such a tendency to attribute neurologic malfunctioning to willfulness or to faking. Whether it is the hyperactive child who cannot learn or the Central Pain patient who cannot stand the touch of clothing, it is hard for the public to comprehend what they cannot see or perceive. As Mark Twain said, "You can't trust your eyes if your imagination is out of focus."

It is a hard reach to explain to the fortunate individuals who know only normal pain and who do no understand that pain can be terribly severe even if it fails to communicate the analytical and protective information pain was meant to convey.

In a sense then, the absolute best way to comfort a Central Pain patient is to become a neuroscientist and find a cure. Since the work in brain science is only just beginning, there are few individuals with the academic credentials to offer positive assistance to pain patients. The indifference of the scientific community to pain research is truly unfortunate. It is vastly easier for a scientist to win the Nobel prize by discovering information on some distant world than by penetrating the mysteries of human suffering.

Pain scientists have been relegated to the same forgotten status as the patients they seek to treat, and in this, they share our pain. So while we doubly praise and adulate the handful of scientists who have toiled for years on neuropathic pain, their level of function is beyond that of most on the planet who grant credibility to the condition and would desire our suffering to end.

Eliminating Prejudice Against Pain Patients

Accepting the Inability of Central Pain to Convey Discriminative Information

Assisting in Obtaining the Means to Live

What the Public Can Do

Certain aspects of life are so profound, and so big, that humans can hardly speak of them without mouthing platitudes. In fact, some topics, such as the death of a loved one, especially a precious child, are not really processed philosophically; rather, the listener merely tries to summon a platitude spoken enough, that thought and feeling are bypassed. This is supposed to make the sufferer avoid really thinking about it, and therefore to ease the suffering. Is actually impolite to speak of real feelings about emotionally devastating events.

Of course, platitudes don't really work. No platitude can make us forget the smile, the warmth, the innocence of a child who has gone on before a parent. In fact, some platitudes make the hurt worse. Central Pain is one of those experiences that can be made worse if the listener does not stop and listen to what they are saying.

The Physician Who Stole Meaning From Life

First of all, the Central Pain patient can be assured that such a physician has not read the pain literature. He is ignorant of the progress that has been made in this area, and remains in a kind of flat earth society where he is insulted that any information is presented which does not fit into his limited understanding of neuropathic pain.

Physicians are, after all the good guys. They are our only hope. For us, Central Pain researchers are saints indeed. We beg them to continue their efforts and pray they will deliver us from our terrible suffering. Consequently, the foregoing comment about physician contact would not be included, but for the fact that nearly every Central Pain patient who corresponds with PainOnline, does so after having been devastated by a doctor's rejection.

Without necessarily laying the responsibility for desperate acts at the feet of a doctor, it is our fear that callous indifference has driven more than one patient to express their hopelessness after such contact by ending their own lives. This comment is made with the anticipation that the real experts in the field of pain will know only too well how lacking in pain education the medical profession is. It is also why PainOnline recommends dealing only with true pain experts, as pain is beyond the expertise of those who do not specialize in treating it or researching it. As much as we appreciate the real experts, we cannot ignore the broken hearts, the crushed spirits of those with Central Pain who have been further broken by the relentless ridicule and harsh rebukes from doctors who are absolutely clueless about what Central Pain represents.

On the other hand, Central Pain patients are not always an attractive group to deal with. They tend to forget that even the best expert cannot help if there is no known cure. They may overlook the aspect that caring physicians suffer themselves from having to make such a statement. They would like to help, but cannot. They nevertheless hope the patient will help them understand better. Central Pain patients must not become disgusted with a doctor who says he has no cure, as long as he is trying to understand. Our plight will be taken by these doctors to the research centers and they can do much good in suggesting the allocation of funds to needed research..

Part of the problem lies with medical schools, which generally do not include pain education in the curriculum of medical training. We can forgive the doctors who punish us so mercilessly because they have never been trained in pain disease. Let us bind up our deep psychological wounds, forget their harping on our weakness and go on to the real experts, who are able to do us good. Let us return good for evil and hope these particular doctors who have ill used us, will never themselves have to endure and suffer severe neuropathic pain. Those of us who have Central Pain would never wish it on anyone, even our worst enemy.

Unfortunately, of their own choosing, our worst enemy sometimes is the doctor who refuses to afford us the dignity of being a patient. They harm us, they influence the way we are viewed by our spouse, and they are untrue to the oath of the profession, which is "First do no harm" (primum non nocere). This last word in Latin, "nocere" is the root word from which comes the word nociception, which means "normal pain". As Central Pain patients, we would like them to realize there is another kind of pain which is different,  neuropathic pain and not overlook or contribute to that either, even if they know nothing about it.

Physicians who swear to the Hippocratic oath also swear to see that their patients "suffer no injustice". Certainly it is injustice to castigate a Central Pain patient for claiming to have bizarre pain, just because the physician has no training in the area, or because the vocabulary is lacking. And so we say, "Please read the pain literature", so that your patients will suffer no injustice, at least not from your own hands.

Albert Schweitzer said, in an attitude that reminds us of Mother Theresa,  "I consider that it my greatest honor is to be able to help patients in pain. Pain is a more terrible lord of mankind than death itself". It is not polite to admit that men would strongly prefer the end of life to persistent terrible pain, but Schweitzer's statement is not an exaggeration. Davidoff and Nepomuceno have both surveyed partially paralyzed cord injured patients with Central Pain, and have uncovered the astounding fact that severely affected patients consider the pain more disabling than their loss of mobility. Many indicated a willingness to sacrifice any remaining mobility if the pain could be stopped. Simple reflection would reveal why this is true.

In the "Hobson's Choice" of suffering, terrible pain can trump immobility, and that is saying a lot. That conclusion comes from paralytics with Central Pain themselves, and is here included to remind us that they need our help with pain as well as learning to regenerate motor neurons. Their sensory neurons are also broken and may be even more sorely missed. This statement is not intended in any way to diminish the bravery and patience of the paraplegics who somehow maneuver through life demonstrating how lucky the rest of the population really is. It is just that severe pain is too much to bear forever. Yet we find these souls in that very state. We must reflect rationally on what that really means.

We do not conceive of hell as perpetual confinement in a wheelchair (although we should think about what a glorious thing a normally functioning body is), rather we tend to think of hell as unending pain.  Someone who seeks to comfort those with Central Pain must ever bear that thought in mind. The general rule is that any response which begins with the words, "You are lucky..." or "At least" is wrong and insensitive. Remembering this will keep us from belittling the experience by saying such things as "You are lucky you aren't totally paralyzed", or "At least you didn't go blind", "At least you are still alive" or similar unhelpful things.

Have we really forgotten how weak we all are before severe pain, how quickly our resolve to maintain human values dissolves in the face of unbearable torture. Pointing out that additional terrible things might have happened (which ironically may be nowhere near as bad as Central Pain) is in no way a comfort to Central Pain and is no balm to the agony.  In fact, the statement is tantamount to saying "I refuse to acknowledge your suffering".

One just as well watch someone whose clothes have caught fire and cry out, "At least you didn't fall and break your legs". Perhaps all those fingers which point at the medical profession for being insensitive should realize that physicians have no monopoly on this attribute. Physicians have set for themselves a high standard, but they only display a universal human weakness of caring more about our own suffering than that of others. Physicians are like other people when they are uncaring, indifferent, or lacking in compassion. These are traits not easily unlearned, and when we are presented with someone who cannot even describe their pain, and the pain is in no way visible, it is no wonder that platitudes come so quickly. If we wish to be of comfort, we must react rationally, not in a way that justifies suffering. If someone has diabetes, we look for a way to manufacture insulin, we don't tell them "at least they don't have cancer".

What Could We Say That is Helpful?

I am so sorry to hear you have this pain. I don't know anything about it. How does it affect your life?

It is terrible that you have this condition. I am going to write a letter to my elected representative, asking that pain research be funded.(This is the best response of all, because it can actually accomplish a cure),

I know it must be difficult to have a condition so painful that you cannot bear the touch of clothing and so must dress in abbreviated fashion. You are welcome to be here and please don't feel self-conscious about your clothing.

A Short Letter to Spouses and Family

If you had such a condition, wouldn't you work to prevent it from spilling over into the lives of your family? Consequently you would try not to tell them of times of agony, of loneliness, of weakness, and humiliation. Perhaps more than ever you would try to experience happiness through increasing its measure in the lives of your loved ones, for you yourself would feel mainly pain. You might long for your day of rest, but you would not speak of that to avoid causing fear of death among children or cherished spouses. A person who says they cannot find the wish to live is often heard by a child or spouse as saying that they do not love them, or that they are not sufficiently good to generate the will to live in the person with Central Pain. Most of all, your spouse does not tell you of their pain because they love you, and want to make your life better, not worse.

And so, there are no words to describe the disease to you, and they are unwilling to tell you what it is like, because they do not want to impair your life. It is not a situation where communication is easy, or at one level, where it is even desirable. What you can do is to be happy, to give them the satisfaction of seeing that life does go on for those they love, even if science cannot yet restore such life to them. You can make their lives easier if you try to be understanding and when they say they do not feel like doing something, try not to complain and make them feel even more guilty for what they cannot do. Most of all, you can be determined to influence public opinion that a national priority is needed for pain research.

One in six Americans will develop a chronic pain state, although few will develop Central Pain. Statistics don't matter if it is your loved one or your neighbor who has Central Pain. Pain states are a silent epidemic. They hit so hard the patients are too sick to be their own advocates. Here is where they need you.

Be a Good Samaritan. Start letter writing campaigns to elected representatives in Congress requesting the funding of pain research. These letters do bring results. Write and keep writing. Get other family members, neighbors, church groups, social service clubs, and local officials to write as well. The cure for Central Pain will be a grass roots effort. Get involved, but understand that your family member does not truly want you to know how they feel. Chances are you could not sleep at night if you knew how severe was their suffering.