People who develop rheumatic diseases such as S.L.E., rheumatoid arthritis, etc., often seem to have pre-illness personalities that have been described as overachieving, hyperactive, perfectionistic, independent and self reliant. They tend to be responsible , energetic and, perhaps most frequently, "on top of things" and "in control of their lives."

Often it is this very independent and active type of personality that seems to have a great deal of difficulty accepting and adjusting to the various challenges and limitations imposed by lupus, it's treatment and it's various consequences and complications.

While depression and anxiety are a natural response to most chronic illness, lupus patients seem to have an inordinate degree of such. They seem to be especially demoralized and overwhelmed by the inevitable lifestyle and life-goal limitations, alterations and changes dictated by their lupus. It has been speculated that this type of personality is formed because of deep early-life conflicts that make passivity and dependence on authority figures extremely frightening and guilt inducing with the inevitable loss of self esteem. Thus, the extreme independence and activity of this sort of personality is seen as an overcompensation and defense of the feared, and even hated, dependent state.

Self esteem is dependent on being in control. In this light, it is easy to see why patients with this personality makeup seem to be especially affected by lupus.

Since the usual onset of lupus is characterized by prolonged insidious fatigue and weakness, loss of energy and zest and occurs at that time of life when most similarly-aged friends seem to be in the "flower of youth", the lupus patient is often overwhelmed emotionally and physically. This is especially true in the early or pre-diagnosed state when there is so much uncertainty, confusion, fear and self doubt. This is only reinforced by all those well-meaning friends and family members who are so quick to say, "how healthy you look."

Frequently, the personality of the S.L.E. patient compels them to try and cope with all these tensions by doing what had worked so well prior to the lupus; namely, actively pushing on even harder. At this stage, they push on until they "burn out" and drop!

Of course, this often erodes their self-confidence and intensifies their bewilderment, uncertainty and apprehension.

Some lupus patients have unconscious guilt feelings and interpret their lupus symptoms as punishment. Patients can misinterpret the fatigue and diminished motor activity as "laziness" or uncooperativeness. Often these self-effacing, distorted notions are held despite an abundance of obvious, objective evidence to the contrary. This illustrates and underlines in red how fixed some of these attitudes are.

For the most part, when a specific S.L.E. diagnosis is finally made after a long preliminary symptomatic period, most lupus patients feel relief, slight euphoria and magical expectations for a quick cure. They enter a short-lived "honeymoon" with their rheumatologist. Inevitably, as reality dawns, there is a letdown.

Many lupus patients with this personality pattern seem to operate on the false notion that the "good patient", like the "good child", is seen and not heard; that is, they do not complain to family or doctor. Paradoxically, this "good patient" role usually deteriorates into depression, loss of self esteem and even more anxiety. This consequence is not surprising when we consider that this "good patient" attitude and role is seen unconsciously by the lupus patient as a state of passivity, vulnerability and dependency that borders on submission, helplessness and total loss of control.

Remember that this feared state of vulnerability and hated self image of dependency and weakness was what originally provoked the personality to develop into the classic picture of independence, strength, control and competence.

These people find any mild regression into appropriate and necessary dependency threatening and equated with impotence and loss of self esteem. In fact, some lupus patients who seem to be uncooperative, noncompliant, testing or even challenging of medical recommendations and use excessive denial are often struggling in a misguided way. They try to ward off this demoralizing and deep-rooted threat of dependency and helplessness with its attendent dangers.

Recognizing these common psychological fears and mechanisms and surfacing them so that they can be understood and their energies can be redirected into more realistic and appropriate attitudes and behavior is essential to assisting the lupus patient to cope and contribute constructively.

The patient rap groups are especially useful in facilitating this process.

The patient rap groups are an adjunct to the total psychosocial-medical care of the person with lupus. The rap groups serve to provide all sorts of intrinsic support. There is emotional warmth, friendly commisseration and a sense of closeness with other patients. These groups provide the transmission of accurate and current medical information, an opportunity for venting one's feelings and the inevitable selection of "kindred spirits" for friends, along with much, much more that contributes to the individual's welfare.

The group leaders attempt to actively guide the patients toward restoring hope and enhancing their intelligent cooperation with their physicians.

Perhaps most importantly, the group process seems to dispel and reverse negative self images and self-defeating attitudes and behaviours. Regressive, non-compliant and treatment-resisting behaviour often are modified or overcome.

The rap group participation seems to promote a greater sense of group involvement and self control in the patient's mind. It contributes to greater hope, self esteem and intelligent and active redirection of energies into appropriate activities. The rap group promotes the acceptance of limitations without despair and greater appreciation and cooperation with the medical team.

In addition, the participants tend to develop more tolerance and acceptance of their friends, family and themselves. They feel more an active participant in their own care and in contributing to the "lupus cause" by helping other members.

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