Jon Russell, MD, PHD, Health Science Center, University of Texas San Antonio, TX
A selection from the Lupus Foundation of America Newsletter Article Library
"What is SLE?" Some of you have recently heard yourself ask that questions. I have WHAT?
What is Lupus? Other of you have known of that diagnosis for many years, but still meet such questions in conversation with friends or acquaintances.
Systemic Lupus Erythematosus (SLE) is a relatively uncommon autoimmune disorder in which the body=s immune forces are turned against ist own tissues and organs. The normal immune system is composed of several different forms of white blood cells which normally circulate in the bloodstream and take up residence in such organs as the spleen and lymph nodes. Their normal function is to recognize and destroy foreign invaders, such as bacteria, which are constantly attempting to gain access. A complex identification system exists which allows these cells to recognize the difference between the body=s normal cells, called self, from those foreign invaders, called non-self. Self-tissues are not normally attacked because they are recognized as belonging there.
The problem in Lupus, we believe, is that the fail-safe mechanism, at times, is bypassed. The guardians of the body=s internal peace and safety, the white blood cells, get their identification signals confused and turn their destructive powers on the body=s own tissues because they see them as being foreign. It is as if the National Guard were to become confused in scattered parts of our country, and begin to attack our own citizens, as if they were all agents of the enemy.
Eventually, they would discover their mistake in Florida, only to have the same thing happen in the next month in Montana. After this sort of happening was observed to occur the same way in different parts of the country, we would begin to suspect that our National Guard system has some inherent defect and that some insurgent group has discovered the way of turning this defect against us. While the unexpected attacks would be readily evident, it might be very difficult to detect exactly who or what caused the problem to occur. By the time the problem surfaced, the inciting enemy agents might have already slipped away, undetected.
So it is with Lupus! We have now learned to recognize the pattern of the attacks. By trial, we have found ways of treating them to minimize their destructive effects. We have even found evidence for a genetic predisposition to an abnormal immune response. But we still don=t know what sets it all in motion. Certain exposures are known to make Lupus worse, for example, sun exposure or excessive fatigue. But these are not an adequate explanation for all the problems that are observed.
When a healthy individual is invaded by an infectious agent, the battle for internal supremacy results in symptoms such as fever, rash, headache, muscle soreness, or fatigue. Some of these symptoms result from products of the infectious agent, while others come from the defending white cells themselves. Thus it=s not surprising to find that some of these symptoms occur when the white cells attack the body=s own tissues. In fact, the inflammatory response ongoing in a Lupus patient has much the same effect on the patient=s well-being as an infection would. It has long been suspected that an infectious agent is the inciting cause of SLE. While no such agent has ever been identified in the majority of patients, we still believe that an infectious agent such as a virus may initiate the process.
While there are many questions which remain unanswered concerning Systemic Lupus, our understanding of this disoder has made giant strides over the past twenty years. It would be impossible during our brief period together this evening to cover each of these developments in detail. Other members of your Medical Advisory Board will, in the future, discuss with you the clinical features and recent developments as they pertain to the skin, kidneys, blood-forming organs, lungs and nervous system. But tonight, I would like to speak more in generalities.
As we have already discussed, it is our belief that patients with auto-immune disorders like Lupus are somehow genetically predisposed to their disorder. Thus, even though symptoms may range from nearly incapacitating at one point to completely asymptomatic at another, the patient is never entirely free from the potential for chronic disease. Patients with almost any chronic disease, including Lupus, tend to face somewhat similar types of problems. I would like to share with you this evening what I consider to be the five major problems which cause insecurity and stress in the Lupus patient=s life, followed by the five approaches that a Lupus patient can use to successfully handle these problems. The following factors, I believe, are the MAJOR SOURCES OF INSECURITY TO THE LUPUS PATIENT:
(1) LOSS OF GOOD HEALTH.
We often don=t recognize how valuable good health is to us until it is suddenly threatened or lost. When we suffer an illness such as a cold, which we know will have a brief duration and no lasting effects upon our life, very little stress is engendered. In contrast, when one is informed that he has contracted a chronic illness, which will always be with him, the effect is quite different. It=s a normal response for an individual to mourn the loss of his own health, even more intensely than he might mourn the loss of a loved one. Like mourning the loss of a loved one, mourning one=s lost health can lead to problems unrelated to the disease itself, including depression. One natural phase in this mourning process is a patient=s unwillingness or inability to accept the association of that diagnosis with his or her person. It is common, for instance, for a patient to know that the diagnosis is Lupus, but yet cringe and get a lump in the throat whenever that name is heard in a public or private conversation. Along with lost health, there are a number of other causes of insecurity such as physical discomfort, loss of a job, financial difficulties, and so forth.
(2) POOR UNDERSTANDING OF THE DISEASE PROCESS.
It is not at all unusual for a patient to confide with friends that he or she cannot even pronounce the name of the disorder, much less tell them what it=s all about. Surely that must be a very umcomfortable and insecure feeling to know that something of major importance is going on within your own body and yet you have no real understanding of what it is or how it will affect you. In SLE, this problem is somewhat complicated by the lack of update information available in printed form. Because of the rapid changes is our understanding of this disorder over the past few years, books written about it five or ten years ago are now quite out-of-date. It=s simply not possible to go to a public library and obtain readable up-to-date information about Lupus. Patients understandably wonder about the terms used by their physicians but often are afraid to express their lack of understanding. A patient might wonder about such terms as leukopenia, anemia, or renal involvement. She might ask herself what do they mean and how will they affect me? In addition, there may be an appropriate concern about side effects to medications that are taken. While the physician may make every attempt at explanation, there is just so much to learn and much may be missed along the way. So, lack of understanding can be a major source of patient anxiety.
(3) A NEW DEPENDENCY ON OTHERS.
An individual who always considered him or herself to be selfsufficient and independent may suddenly, because of chronic disease, become very dependent on other people around them. Many of the patient=s duties within the home or at work may fall on someone else. The necessity for such adjustments may place an added strain on the family relationships. Marriages which had been barely surviving may even be stretched to the breaking point. Thus, it is not only the insecurity of dependency, but also the fear of loss of love and approval which are major sources of insecurities to the chronically ill patient. Patients also find themselves seeing the physician more frequently and for more serious problems. Since Lupus tends to involve many organ systems, it=s not uncommon for a patient to be seeing a multiplicity of physicians, including dermatologists, nephrologists, rheumatologists, hematologists, neurologists, and so forth.
Sometimes the patient finds him or herself caught in the middle between the differing opinions of various medical specialists. While the physicians may see their differences as only minor, the patient understandably views them in quite a different light. Other people on whom the chronically ill patient suddenly becomes dependent includes strangers such as new physicians, physical therapists, nurses, ambulance drivers, and insurance adjusters. With continued illness, proud and hardworking people are sometimes driven to dependence on government subsidies and charity which certainly would be seen as a major source of insecurity and frustration for them.
(4) GUILT.
It is a common belief among many peoples of the world that prosperity and good health are favors bestowed on good people, while illness and poverty are the results of sin or mismanagement. The patients with Lupus or other chronic disorders commonly carry burdens of guilt that they have in some way brought this problem upon themselves. Similarly, they feel guilty that because of the illness, they=re not being the kind of good spouse or parent that they should be. It=s not surprising that when they recognize a slight hereditary tendency for such disorders, they feel guilty that they may be passing such a disorder on to their children.
(5) A FEELING OF ISOLATION.
Not uncommonly after a brief or extended illness, the patient is finally given a diagnosis, such as SLE, which he has never heard of before. Since the patient has himself not heard of the disorder before, he or she naturally assumes that it is very rare and no one else is similarly affected. This feeling of isolation may place barriers to friendly conversation and lead to a patient to retire more and more from society. In addition, there is a tendency for former friends to leave the chronically ill patient out of planned activities for fear that they won=t know what to say or that something bad will happen. This increases the patient=s isolation and the sensation that a stigma or black cloud is hanging over his or her head. Another factor which tends to isolate patients from society is the tendency of the curious to stare when a patient disabled by a rash or arthritis, is seen in a crowd. Such curious glances increase the patient=s discomfort and make them unwilling to be seen in public.
Considering these important problems experienced by the Lupus patient which may lead to significant anxiety and insecurity, I would recommend the following FIVE WAYS OF HELPING THE CHRONICALLY ILL PATIENT TO ADAPT SUCCESSFULLY.
First of all:
(1) DON=T TRY TO PLACE BLAME FOR YOUR ILLNESS.
It certainly is a natural tendency when problems beyond our control present themselves to blame ourselves, or our family, or our physician, or even God for our adversity. Such blame-placing, however, generally proves unsatisfying and often results in hostilities which are unhealthy. Norman Cousins, a well-known journalist, claims that laughing heartily during his illness was a major factor in his getting well. Certainly there is a benefit to a positive, wholesome attitude which looks hopefully forward, rather than angrily backward.
(2) GRASP AT REASONABLE HOPE.
Your physician will always attempt to give you realistic things to be hopeful about such as, "the white count is still very good", or "we have no evidence that this is affecting your kidneys".
Latch on to these indications of good outcome and use these hopes to keep your spirits up during difficult times. Be open about your real feelings and be willing to share them. As much as possible, focus on positive, hopeful indications rather than being readily depressed by the problems. It is important to recognize that the apparent prognosis of SLE is considerably better than it has been in the past. It is not, of itself, an ultimately fatal disease. Each person with this disorder is unique and presents with different problems as well as individual strength to cope with them. Recognize that Lupus is a disorder characterized by spontaneous changes in disease activity and try to see beyond the increased difficulties of today to the improvement of tomorrow.
(3) SEEK GOOD ADVICE AND FOLLOW IT.
This category pertains primarily to advice from a physician experienced in the care of Lupus patients. We are fortunate in this community to have many physicians that fit that description. Probably the best source of information regarding which specialist to choose is your private physician. He knows you health history and physical problems in detail and can be very helpful in guiding such a descision. Other sources of such information include the County Medical Society and the Arthritis Foundation. It is important, I feel, that each patient have a single physician, preferably a general internist or a family physiscian, who will coordinate all aspects of medical care. The advice of specialists, then, can be placed in appropriate perspective and the coordinating physician, rather than the patient, becomes the intermediate when, or if, differences of opinion arise. Once a careful plan of therapy has been outlined, it is very important for the patient to follow it carefully and report any problems which arise to the coordinating physician. That brings us to the next category.
(4) DO WHAT YOU CAN FOR YOURSELF.
There is a saying that if you wish to have good health, get a chronic disease and take good care of yourself. Physicians have long known that their best ally in medical care is a well-informed, motivated patient. After a visit to your physician, make notes of your conversation, and review them repeatedly until the instructions given are clear to you. Don=t be afraid to ask questions that come to mind so that you will be sure not to forget them. And then there are a number of health principles which apply to healthy individuals, but are even more important to someone who is chronically ill. They include eating regular, well-balanced meals, getting plenty of fresh air, obtaining adequate exercise, and setting aside plenty of time for rest. Medication should be taken as prescribed. And finally.......
(5) DEVELOP SUPPORTIVE FRIENDSHIPS.
To effectively combat insecurity due to isolation, it is very important to develop relationships with people that you can trust. Such individuals may be one or more of your physicians, a phychologist, or some other professional person that you can rely on for emotional and psychological support. Another source of such support is from other patients who are experiencing similar problems. That, in fact, is one of the major purposes of this organization - in that it hopes to provide a means of contact for Lupus patients with each other. In your times of weakness, don=t be afraid to ask for and expect support from someone else=s strength.
Learn how to accept help graciously without feeling that it must somehow be returned or repaid. At times during which your energy level is low, or functional ability is limited, be willing to recognize and accept the fact that YOU ARE JUST AS IMPORTANT TO YOUR LOVED ONES for who you are as well as what you can do. Remember that your physical presence may be more meaningful to them than your ability to accomplish some task.
From Lupus Letter Volume 1, No. 1
E. L. E. F.
European Lupus Erythematosus Federation