Home Lupus Patients in Relation to Family and Friends
By Steven J. Schostal, M.D.

The lupus patient who is intermittently ill and chronically threatened with potential disability is inevitably both consciously and unconsciously subject to a variety of psychological stresses. The vulnerability of any given person to such stress and his specific response depends on a number of factors; namely, the special personal meaning of acute and chronic illness to that person, their previous experience with doctors, hospitals, and other illnesses, and their usual mode of coping with any kind of stress. As a psychiatrist, for example, in terms of patients wanting to know about doctors, just to know how they are going to be taken care of, I’ve been interviewed about my personal life, my views on laboratory and other testing, my belief on the use of analgesics and tranquilizers, and so on. I would say that there is at least one patient in every crowd who is a bit nosy, but such information, by and large, is important to people like yourselves who have chronic illnesses and chronic dependency needs, and need to be taken care of. I assume that most lupus patients are a little frightened and a little anxious. For the first part of my talk I’d like to focus on the patient and I will attempt to list and categorize the types of psychological stress, the groundwork for some of which is laid in childhood. There are at least seven of these stresses which I have tried to lump together for a nice round number.

1. It’s the basic threat to what a psychiatrist called “Narcissistic integrity,” that is, the wholeness of the human being. Lupus is a narcissistic insult, an insult to the very self -- not much different from a constant and chronic put-down from another person. Sickness and the threat of chronic invalidism and/or early death undermines the basic self-sufficient belief that our bodies are indestructible, and that we can control the world around us. I think this is something that most people, until they run into a chronic illness, do feel. Lupus surely challenges this belief in autonomy and control. Medical care absolutely destroys it. What doctors and hospitals ask people to submit to -- routines, regimens, procedures -- hack away, bit by bit, at our basic sense of self and self control. In short, lupus and its treatment reduce a full, functioning human being to feeling somewhat lass than the same. I don’t wonder that a large portion of the lupus patients I see are either angry, depressed, or both.

2. The fear of strangers, and that’s people like me. Patients are asked by doctors to put their health, lives, and futures in their hands. I’ve seen those though raving about how great their doctor is, demonstrate a not so subtle hostility -- probably secondary to the enormous dependence that the illness puts them in. I guess another way to phrase it is -- when you go to your doctor, would you buy a used car from him?

3. Separation anxiety. Every lupus patient is subject to periodic hospitalizations, or at least the threat of them. These take a person out of his or her own environment and away from the people who are important, both of which give human beings a sense of who they are.

4. And this is probably one of the most important. It is the fear of loss of love and approval from the significant people in your life. I cannot stress this enough. Most people see any form of sickness, especially a debilitating disease like lupus, as making them less desirable to others. Basically, people would think, “I’m not the person I used to be -- how could my husband (wife) love me?” Many people are also in touch with the somewhat primitive fear that the need for others at times of stress, at times of sickness, at times of “flare-ups,” is going to alienate those whom they depend on, whom they feel closest to, and push those people away. Patients often respond to this stress by beating the other person to it -- pushing the family away, withdrawing before they are withdrawn from. Them there is the woman whose positive self-esteem derives from her appearance as well as her ability to run her home and her three kids with one hand tied behind her back, and maybe work part-time, and it just can’t be done -- at least for periods of time. We all know what steroids can do cosmetically, and we all know the correlation between lupus, lupus flare-ups, steroids, and energy level. Very difficult. Stress number 4 -- fear of loss of love and approval.

5. One can’t overlook the inner and often unconscious stress of guilt and fear of punishment. This is most often overtly seen in very religious people or primitive people from very fundamentalist backgrounds, but basically is present, I think, in most of us because we’re human. Lupus is viewed as a retaliation for some crime or misdeed, even though none may be apparent to the patient. More than a few times I’ve heard “If and when I get over this, I’ll be different,” and I feel like saying, “Different from what? What was wrong in the first place?” I’ve asked other patients how they explain to themselves that they’ve gotten this miserable disease and not the person next door; and very often get the response, “I’m being tested. God is testing me. It’s a burden I must carry.” And they’ve tried to work it positively. Sometimes this can be helpful in coping with anger and depression day to day, but as a psychiatrist, I find it very difficult to watch massive and often overwhelming guilt take hold of a person’s life.

6. The more obvious stress of pain and fatigue, chronically and intermittently. I, for example, tend to be a somewhat hypochondriacal person. I mean, if I get headaches or stomachaches, I just roll over and die, I mean literally. Along with fear of loss of love and approval, this has led some patients I’ve worked with to say, “Who would want to be around me? I’m no fun. I don’t even enjoy myself anymore.”

7. Several feelings of uncertainty about the future. This is another one I can’t underline enough. What does it hold? Possible exacerbations, lupus flare-ups, need for more medication, shortened life span, disability?? Maybe yes. Maybe no. Difficult to plan for. Control is the major element in becoming an adult, and lupus patients very realistically have less than the general population. On top of it, this sense of uncertainty leads to an even more frustrating sense of isolation, helplessness and, at times, feelings of hopelessness. These seven, then, are one way of conceptualizing and categorizing the psychological stresses on the lupus patient. Which stresses the individual patient will experience is dependent on the patient’s previous experience with illness in general, lupus specifically and, of course, all the other things that are going on in a person’s life.

Now, what about the families? What about your families? This is where the chronic nature of the disease becomes important to consider. For acute surgery, acute infection, disability associated with accident and trauma, it’s easy for family members to mobilize and support the patient. These are, of course, all time-limited. There is an end in sight. Duties and responsibilities are shifted away from the patient. Flowers and candy are graciously given. Phone calls and cards are sent. One hears the words, “Mother (or Honey), anything I can do for you? Anything I can get you?”

These other situations, in contrast to lupus, are time-limited: and frankly, it’s not hard to be supportive if you see an end in sight, be it a week, a month, or even several moths. The terminal patient’s family, I would say, even has an easier time of it. As painful as it can be to watch someone die, they also know that there is going to be an end in sight. But for the family of the lupus patient, it’s never-ending. They, too, have to deal with anxieties, guilts and fears precipitated by this most unpredictable disease: and lupus symptoms and their severity are very, very hard to understand if you, yourself, have not experienced them. It’s not the same as when one can see the broken leg or visit the hospital and see the bandages. It’s an understatement to say it’s difficult to comprehend what you go through. It’s pretty much impossible, and I’m sure it’s extremely difficult for your families.

What kinds of reactions do physicians and psychiatrists see in families? As with the patient, there exists a whole range of responses. Overprotectiveness of the sort one finds in a first pregnancy; you know, if you can think back to how you were treated when you were first pregnant or how you treated your wife when she was first pregnant. This may exist alone or maybe even ambivalently experienced with the feeling, “How did I get struck with this?” Many family members get very, very angry at the patient, as if lupus were a malicious and willful act directed specifically at them.

Then there is the family member who simply ignores the whole situation and acts as if there is nothing wrong. “If there is nothing I can do about it, I may as well just go on and live my life.”

Neither are family members immune to the frustration depression and its concomitant feelings of helplessness and hopelessness. For example, as a physician and as a human being, for me personally it is very, very difficult to watch someone being sick and have virtually zero control over it. I get very, very angry and I also feel less good about myself, and I suspect the same this goes on in lupus families.

As I stand here talking, I suppose I’m obligated to ask what sponse on the part of the family having a member with lupus. I’m not sure I can answer that question, and if any of you have any preconceptions about psychiatrists, you know we never answer questions anyway. However, there are some comments I can make.

First of all, lupus is a family problem and needs to be viewed as such. This requires that other adult family members and even children understand as much as possible about the disease. Regular contacts with the physician might be one route that one takes. The family member cannot share the disease itself or understand it exactly in the same way as the patient, but such understanding and sharing the consequences of the disease must be maximized.

Secondly, and I will underline this, there is not single healthy response to lupus and a lupus flare-up. The trick is to find the best response at a particular time -- sympathy when the symtomatology is at its worst; support during times of fear and crisis; a kick in the behind during the times of patient’s self-pity. I suppose healthy responses are those that fit the situation. Psychiatrists are relatively immoral people. I frequently tell my patients when they ask, “Well, what ought I to do?” or, “What should I do? What’s right, what’s wrong?” that these are determined not by any system of things that is written down. There are no “Ten Commandments” -- but rather by what works for them and what works for their families, and the hard part is figuring that out.

Thirdly, and most important, is open lines of communication. The patient needs to feel comfortable telling other family members how they feel, what is wrong at a given time, and what they think might be helpful or what the family might be doing that is not so helpful ... I cannot stress enough that the family also has to be willing to talk to the involved person about the same issues; how they feel, and what the person is doing that is bothering them, or what about the person you know is helpful for the family in dealing with the disease. It’s relatively easy, for example, for a patient to say, “Thanks, you’re all so good to me,” but there are times that the patient has to express the less positive feelings like, “It makes me angry every time I talk about how I feel, you change the subject.” For the family member, it’s relatively easy to say, “I feel awful watching you when you’re sick.” It’s much harder but perhaps even more important to be able to say, “This time I find myself angry with you for being sick and looking depressed, and I don’t even understand why,” or “Is it really that bad? Just last week you were doing fine, and this time you’re really getting to me." The disease, for heaven's sake, is a family problem and, as such, much easier to deal with given open lines of communication.

There is very little, if you stop and think about it, that cannot be talked about if you just give up some fear. Otherwise, individuals are left in total isolation to deal with what can be very large and powerful feelings. Neither can feelings be lied about. I don't know many people who lie well when such emotional and significant feelings are involved and I can't stress that enough.

In summary, I will say briefly that I you have some comprehension of what is going on with your family and your family has some idea of what is happeing to you, over the long haul you can probably make the best of what is basically a pretty lousy disease to have.

Reprinted from Horizons; Newsletter of the Atlanta Chapter