So often in life, the things which give offense are habits in others which we dislike in ourselves. Catastrophizing in the literature about catastrophizing in patients is one example.
The invalid sneer is more to be condemned tnan the invalid sob. Catastrophizing in response to a claim of pain is more morally deficient than catastrophizing a small malady into a large one. We do not intend to take sitting down (the only position possible for many of us) the allegation that anyone with central pain is catastrophizing nor anything remotely akin to it. How does one catastrophize what only comes in varied grades of catatastrophe.
Shall we argue about comparative brutalities which have resulted in amputation? Will we debate the relative severity of being crushed vs. being drawn and quartered? Will the evaluator please provide the unit of measurement. Without units there can be no measuring. How do we find the units to measure burning so severe that touch itself cannot be tolerated. How do we measure the human isolation which results from dysesthesia, an absolute end to pleasure. We had rather mock the dying than those who must face life in bitter and joyless pain.
Those who pick among the bones to find splinters of catastrophizing are morbid, ignorant, impolite, and pitiable in their finger pointing and superciliousness. “Physical pain is the greatest evil”–Augustine. With an attitude that pain is in the mind, no suffering on this planet deserves the slightest regard. No agony merits the least consideration. Any and all unfortunates may be swept away under the mean and snobbish guise of setting the person straight psychologically.
Shame on arrogance. Fie on ignorance. Disgrace will eventually meet the PhD “doctor” for abandoning the obligation sttendant to his education and elevated status in society. He should surrender the claim of administering therapy to the sufferings of the mind and soul. He has helped no one by “exposing” the malfunctioning and maladaptive ways in which people meet severe pain. The average male rates their most painful experience as “going to the dentist”. What could they possibly know about something as severe as CP?
Yes, there are those who exaggerate pain, but what about those who cannot even find the words to describe it, whose laments fall hopelessly short of the awful reality. The balanced academic must be prepared to benefit mankind when necessary, and to have enough humility to realize when he has come to that threshold. “Never wound more than your ability to bind up.” How will the psychologist who has denigrated pain to the patient’s family, and derided the patient personally for even claiming pain, when in fact that paerson is suffering agony? Can the doctor bind up the heartbreak of endless burning? Let the one who thinks people can mentally insulate themselves from pain put his hand in a fire and then take the measure of his deliberations.
Central Pain produces exactly and precisely the same cascade of pain chemicals as can be measured in severe tissue injury. The mechanisms of neuroinflammation are identical in “real” pain and “nerve injury” pain. This has been proven many times over by assay, and is now confirmed functionally by MRI and PET scans. By the measurements available, nerve injury sufferers have extra pain chemical, above and beyond what a normal person can produce. ALL with CP have lost sensory and/or motor function, to one degree or another. What kind of person are you to ignore their own declaration that the pain is worse? If they were catastrophizing, why wouldn’t they emote on the obvious, their paralysis. Why do they say the pain is much worse? The answer is apparently too simple to be believed.
We like one paragraph we have received in an email, concerning the frustrations of dealing socially with CP:
“Can you deal with the fact that I am different? Is that okay with you? How much anal retentiveness do you wish to grasp to your way of thinking? How much stereotyping are you capable of? Talk about “profiling”! I have central pain. If you even knew what that was, nothing more would need to be said. Go to church, sing your hymns, and talk about religion in the abstract, weep over the righteousness of the prophets and apostles long dead, but then, if you will not help me, at least let me alone! Where I am you cannot come. Do not attempt to force me to walk in step with you, and to agree with your notions, to call false everything I know to be true. You ask me to deny what is as plain as the noon day sun, as if that made any sense, or were even possible.”
What is pain intolerance? It is the mindset whereby a pain disparager imagines that someone else MUST acquiesce to a political opinion that pain is psychological. America likes to pride itself on tolerance, but there is still progress to be made, including the way we view those in pain.
Many of the activities a person does each day are so automatic that they would need time to explain WHY they do them. Why do we bathe or shower in the morning, stand back a way from the edge of the sidewalk, or arrange our personal items a certain way? Why do we hold the door open for others, wear clothes appropriate to the situation, or use our dominant hands to perform tasks. There are stereotypic rituals which make perfect sense, but which require little thought, planning, or justification. We just do them. Central Pain causes people to avoid clothing, avoid movement, and avoid the strictures of society. We do it automatically, without thinking, because at some time in the past it made sense. Do not demand rapid fire answers for every adjustment we must make. Do not ask us endlessly if we have tried this fabric or that fabric to wear? Pain is so serious that we exhausted every possible remedy in the first week or so. Do not assume that we must implement every guess you might formulate before you will accept that we have pain.
Now we come to pain intolerance. We receive many letters about the difficulty central pain subjects experience in society because the rituals developed to survive with the condition run contrary to the ordinary. There are too many harsh reactions in those who are impolite enough to insist that our model of coping must resemble their model. We are functioning at different levels of difficulty.
The essence of tolerance is to accept and even love those who are different. Few would be openly bigoted enought to ask why some people have to be black, have “black” hair, eat “black” food, enjoy “black” music, or think like a “black” person. The salvation of all people is more important to them than it is to anyone else, and nearly everyone pursues the path they consider most calculated to reach that goal. I need not force any doctrine upon them. They may think as they see fit. The same luxury should be extended to pain patients.
The problem in central pain is that such people are their own society. They are rational human beings and adopt certain behaviors for very good reasons, but these reasons are not transparent to others. Unless their acts constitute an actual burden on others, why should anyone get upset? Why should our making the claim of being in severe pain cause others to be insulting, castigating, aggressive, and to resemble some part of a horse? The answer can only be intolerance.
News Flash for pain disparaging doctors. Central Pain is not about you. It does not matter that your ego is bruised by your failure to be of any help. It is not your ego which must be engaged in the care of nerve injury pain. It is your heart.
Let us look for example at the recent spate of articles on “catastrophizing” in pain. No one can really define “catastrophizing” because there is a comparative element missing in pain which is essential to the term. How can I say something is bigger than it ought to be or smaller, if it is behind a black curtain? Catastrophizing means to make something bigger than it is, to make large that which is small. It would be impossible to attach any meaning to the term “catastrophizing” unless there were some objective, reliable means of determining what is large or small in the first place. If bad pain is going to the dentist, then CP is a herd of T. Rex feeding on your flesh.
For the Central Pain patient, using the word “catastrophizing” is like using the “N” word toward a black person. It is an insult which detracts from human dignity. What does the public, even that portion with medical degrees, know about severe central pain. It is s a cinch no M.D. who is actually an expert in the field would ever accuse an SCI patient with inability to tolerate clothing of catastrophizing. Most experienced doctors are in despair at the steady stream of suicides in the clinic. They mourn the loss of life and their inability to make a critical difference in SCI pain. We cannot help suspecting that given the failure of therapy to help severe CP that some “failed caregivers” decide the best defense is a good offense.
When we examine articles about catastrophizing central pain, we see that the authors are themselves doing the catastrophizing. The only burden on them is guilt. Someone has paid money, generally about fifteen thousand dollars, in what bills itself as a pain clinic, to find relief, but the clinic has failed. Since by definition, in some people’s minds or egos, failure is not an option, success must be garnered by laying the blame on the patient. It would be a catastrophe to admit that the doctor had very little or absolutely nothing to offer someone who had laid out such a large sum of money. They imagine they can at least “help” us by pointing out that we are mistaken. Their solution is to catastrophize what the patient is doing, claiming to have severe pain.
There are certainly those who focus too heavily on pain, but the really severe cases do not do this. They use every means possible NOT to think about the pain. Terrible pain is both exhausting and demoralizing. People in chronic torture are always haunted by the fear that in a weak moment, they may be inclined toward taking their own lives, which nearly all consider to be a mortal sin. However, considering something a mortal sin does not prevent one from considering any way possible to get free of agonizing burning. There is no catastrophizing at all in this struggle. There is only courage, determination, and the natural hope that someone, presumably a doctor, might be of help.
Thus, it is disgusting to watch some of the doctors at the pain clinics write articles behind the patient’s backs about catastrophizing. While some patients do this, it is just as evident, and much more offensive to see doctors doing it. The patient has done them no harm, and by the Hippocratic Oath the doctor is bound first to do the patient no harm. Hippocrates also added that the doctor is to see that his patients suffer no injustice. Frankly, bundling up severe pain cases and writing them off in a nasty article about their supposed catastrophizing is the infliction of harm. This involves systemmatic dislike of a group which is different. Preventing harm to a CP patient is a major task. Nature is already crushing them.
What could be more harmful than to trivialize central pain, to designate pain as an illegitimate category, to shove sufferers into an contemptible aspect where the incentive to research is eliminated. Doctors should champion the cause of central pain patients, not waste most of the exam time just trying to satisfy themselves that the patient actually has pain. The first clue is these patients have usually traveled hundreds of miles with money they could not spare (sometimes donated by the family or community) to make the trip. A second clue might be the ruin of their lives. Another might be the inability to wear appropriate clothing or to tolerate movement. The picture will be completed with severe depression, exhaustion, and desperation.
How a “Doctor”, clad in a white coat, can come away from this experience with a sly smile and chalk up another “crock” for his article on catastrophizing is a mystery, except that no one catastrophizes more than an ignorant, blind doctor. No greater offense can they imagine than that someone present a problem to them which they cannot solve. What a blow to the doctor’s dignity and superiority! Hiding behind the supposition that no pain is actually being presented is similar to a fireman watching a building burn down, while he checks his GPS unit to make sure he is at the right address for the fire.
Now we must also examine the homes where CP patients live. It is obvious that someone with severe pain from light touch will dress in abbreviated clothing. Their sleep patterns will be drastically altered. They must sleep whenever the opportunity presents, because it is not going to last long, due to the interruption by burning from touch from the sheets. They may in fact require 24 hours a day to try to find five hours which they can call sleep.
It is also obvious that for those with cold allodynia, they will develop routines which avoid blasts of cold air or sudden immersion in cold water. For those with severe CP in the muscles, EVERY movement is painful. Instinctively, the CP subject will be led into behaviors, the reason for which may be obscure. Someone does something differently. Even if it causes no effort on the part of others, the difference is enough to set some people off.
We received a letter from one CP subject who has SEVERE visceral CP. With bladder filling, there is instantaneous pain. Since the person spends much of the day naked, isolated in her room, and does not wish to don clothing and endure the minute or so of intense pain from the full bladder, she uses a urinal in her room. Now one would think the family could understand this, but the idea that mother has a urinal absolutely creeps out her teenagers until they have further isolated her, beyond what her condition already inflicts. Is this not catastrophizing on the part of her family? The urinal is sealed, emits no odor, and is a blessing in enduring the pain. Why get freaked out about it? This person also has severe muscle pain, and merely saving the pain of movement to the bathroom is a blessed relief. Still, there can be tremendous social pressure to conform, because without it, people catastrophize, as if something terrible has happened to them.
And so, if one is going to use the word “catastrophizing”, let them apply it to the doctors who find themselves unable to support their “God complex”, a family who imagine their social standing is impaired, or churchgoing folk who fall into a dead faint if someone shows up in shorts and a t shirt instead of a suit and tie. Come on people, stop catastrophizing! Life will go on if you allow a sick person to adapt.
The rules of life change in CP. Boy, how they change. You must choose. We cannot have our lives and live your rules. Are norms really that important to you? No one demands that quadriplegics “GET UP” our of those phoney wheelchairs and walk around like “respectable” people. That would be rude beyond description. You cannot see pain and you know this. Will you continue to demand that we act, move, and behave as if the pain is not there?
It does matter if you throw us into the trashbin of humanity by labelling our perfectly normal reaction to severe central pain, “catastrophizing”. Save that language for sissies. There are no wimps among those who have survived Central Pain for months, years, or decades. They are survivors. Don’t believe us about the pain? Time to reach for the capsaicin. In which part of your lips, genitals, or eyelids would like the injection? And please, once we stick the needle in, no catastrophizing!