The Lupus Book: A Guide for Patients and Their Families, Third Edition (37 page)

not know how or when to apply it. Whenever friends invited her out during

the daytime, she declined. She became fearful about keeping up her front

lawn and for the first time hired a gardener. When she turned them down

for a third time, JoAnn’s friends stopped asking her to the lunchtime bridge

games she had enjoyed so much in the past. Becoming more fearful and

anxious, she tried to explain this to her doctor, who did not seem to have

time to hear her out. Family members noticed that JoAnn was jumpy and

agitated. When they asked her what was wrong, she said ‘‘nothing’’ be-

cause she did not want to impose. Family members started decreasing con-

tact with her. Finally, she took a self-help course that was sponsored by

the local Lupus Foundation and sought counseling, which started to turn

things around. She is no longer afraid to confront her doctor.

Lupus patients have many justifiable fears. ‘‘Will I be able to work?’’ ‘‘Can

I take care of myself?’’ They express fear of pain, fear of disease flareups, fear of death or disfigurement, fear of drugs and their side effects. This, in turn, creates anxieties that are capable of inhibiting normal social functioning and

serve to promote further isolation. ‘‘What if nobody believes me?’’ ‘‘Am I over-or underdoing it?’’ If a patient is not open and honest with friends, overanxious behavior will turn them off. Recognizing these fears and concerns and learning

to deal with them is important for all lupus patients, who should express their concerns to trusting friends, family, or health-care professionals or take a self-help course, as JoAnn did.

Anger

After Linda was accepted to medical school, she was diagnosed with lupus

nephritis. She was told that she would need high-dose steroids for months,

and that these would alter mood and behavior as well as her ability to

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concentrate. She also had to take chemotherapy, which would make her

quite sick every month. She decided to defer schooling for a year, only to

learn that the school would have rejected her if it had known about her

lupus. Linda became angry. It was difficult to control her emotions on 60

milligrams of prednisone a day. She was cruel to her mother, who had

taken an extra job to help support her through college and no longer found

time to help her younger brother with his science homework. While shop-

ping at a supermarket, Linda, after waiting for 10 minutes on a checkout

line, got into a confrontation with the store manager. When her brother got

an F in science, she realized that her anger was misplaced, and, with the

support of her doctor, began to channel her energies constructively toward

beating the disease and pushing it into remission within a year. Linda is

now a second-year medical student and is thinking of going into rheuma-

tology.

If you have lupus, you have every right to be angry. There are several levels

of anger. Rage is a violent, uncontrollable anger. Hostility, resentment, and

indignation are somewhat less intense. Yes, it’s annoying if you have to give

up enjoyable activities, especially in the outdoors. It is also frustrating and up-setting if the treatment that will make you better won’t work for several months, if you have to have surgery, or if you can no longer think about having children.

It is hard for others to see how much you hurt. But don’t let anger bottle up

inside you. Stress has been known to cause flareups of fibromyalgia and can

possibly aggravate your lupus. Anger takes up a lot of precious energy and turns off others who care about you. Try to channel your energy into productive work.

Ask yourself why you are angry. How can you detect it? Can you ignore it?

Step into your friend’s or employer’s shoes. How do they feel about what is

going on? Think of how you can prevent yourself from getting angry and how

to relieve anger when it builds.

Guilt

Her mother had lupus and Nancy always knew there was a chance she

would get it. But when it happened, the diagnosis seemed to drop out of

the clouds. Since she had been laid off, Nancy was now convinced that the

loss of her job was due to her poor performance and not the economy,

even though she had good job performance ratings. Convinced that a higher

authority was punishing her for being lazy, Nancy would sulk around the

house and blame herself for everything that could possibly go wrong. Her

mother made this worse by overcompensating and saying that because she,

the mother, carried lupus genes, it was all
her
fault. Nothing constructive was accomplished in the household for months until Nancy’s husband told

her that he would leave if she didn’t get some counseling that would help

her develop a more positive attitude. She went for the counseling. Her lupus

is now in remission and she has a new job.

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[199]

Guilt is the sense that you did something wrong or that you blame yourself

for something over which you had no control. Many patients inflict guilt upon

themselves. ‘‘What have I done to my children, since they have a chance of

getting lupus?’’ or ‘‘Since I did not feel well enough to participate in the garden club, does this mean that I am in a weakened position so that others can manipulate me?’’ Don’t say ‘‘I should have done this instead.’’ Block that emotion as best you can. Guilt is self-defeating, and guilt can be a ‘‘self-fulfilling proph-ecy.’’ Have a positive attitude and be ready to modify your thoughts and be-

haviors. Counseling, such as Nancy had, can help you acquire the tools to main-

tain positive attitudes.

Pain

Pain should be viewed as a sensation that is natural, inevitable, and tolerable but one that must be controlled. Most lupus patients have physical pain, but it is usually relatively mild. Only a small percentage end up attending pain centers or taking narcotic analgesics. Fear of pain, however, is a major problem. Most

joint and muscle pain is inflammatory in nature and managed with anti-

inflammatory medicines, not pain pills. Inappropriate reactions to pain, particularly fear of exercise and mobilization, can waste or atrophy the muscles and

make joints immobile. This further promotes social isolation. Patients can help themselves deal with pain. For example, biofeedback helps to control the heart

rate, blood pressure, skin temperature, and muscle tone. It can alleviate pain

from headaches, spasm, and Raynaud’s phenomenon. Guided imagery and med-

itation promote relaxation and decrease muscle spasms. Acupuncture, especially

electronic acupuncture (acupressure), numbs nerve fibers and decreases nonin-

flammatory pain.

Stress and Trauma

Stress is a force to which the body responds. There are good forms of stress—

those that energize the body—as well as types of stress that alter the immune

system. Can stress cause lupus? Several years ago, members of lupus associa-

tions were asked to fill out questionnaires that included queries about how they thought their lupus had started. Between 10 and 15 percent replied that they

thought that emotional stress or physical trauma brought on their disease. How-

ever, when we looked at it the other way around—examining doctors’ records

to see whether patients actually
were
under unusual stress (defined on a ‘‘Life Events Inventory’’ as a death of a loved one, divorce, or loss of a job) or had a serious injury shortly before being diagnosed—this percentage fell into the 1

to 3 percent range, which is not statistically significant. In other words,
it is
unlikely that stress or trauma causes lupus.

Can stress aggravate lupus?
It is very clear that stress and trauma can cause

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a preexisting lupus to flare up
. A large body of evidence has shown that certain animals with autoimmune disease have a defective CRH (corticotropin releasing

hormone—which is made in the brain’s hypothalamus) neuron, which acceler-

ates inflammation under stressful circumstances. Numerous studies have shown

that this is brought about via interactions between the hypothalamic-pituitary-

adrenal axis, autonomic nervous system, and cytokines. Not all stressed lupus

patients experience flareups, and many patients have flareups when they are not stressed. Nevertheless, I have had several patients with chronic, stable, mild

lupus whose disease spread to other organs or who had severe inflammatory

joint reactions after a motor vehicle accident or severe emotional trauma.

Issues of stress and trauma, particularly when problems arise after an accident, can become subject to legal as well as medical definitions. For medicolegal

purposes, these reactions should occur within 60 days of the incident. Docu-

mentation of a flare should be evidenced by a) worsening of inflammatory in-

dices (e.g., sedimentation rate, CRP, anti-DNA), b) increased lupus activity

noted on physical examination, c) additional lupus medicine being prescribed

or an increase in dosing of ongoing medications, d) more visits to the doctor,

or e) referral to a mental health professional or new psychotropic medicine

prescribed to deal with stress noted in the medical record. In state worker’s

compensation laws, we find the term ‘‘continuous trauma,’’ which refers to

ongoing, persistent stress or harassment that causes increased disease activity.

Also included in this terminology is the tendency of a traumatic incident or

continuous trauma to ‘‘light up,’’ ‘‘accelerate,’’ or ‘‘aggravate’’ lupus. There have been several cases in which patients with early nondiagnosed but symptomatic (and medically documented) prelupus who had their disease ‘‘turned

on.’’ Emotional stress can alter the immune system. Studies performed on

healthy individuals who lose loved ones show that their immune functioning is

altered during the bereavement period. Our ‘‘head bone’’ is connected to our T

cells, which, in turn, affect lupus.

Depression

Even though Judith was told her lupus was mild, things didn’t seem right.

Always a perfectionist who planned each activity and goal carefully, she

felt that something else had to be wrong. After all, Judith could not sleep

at night, she tossed and turned even though she had a new bed. She was

no longer asked out on dates. She seemed distracted and always complained

of headaches and cramping, and she was sure that her pulse was too fast.

She no longer enjoyed watching a good movie and forgot how to tell jokes

or laugh. Judith was convinced that a serious medical illness was eluding

her doctors, so she went to the Mayo Clinic and the Cleveland Clinic only

to be told that her local physician knew what she was doing. After joining

a patient support group sponsored by the lupus society, Judith met other

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[201]

people with lupus who proved very insightful and pointed out each other’s

problems. After the third session, the group unanimously told her that she

was depressed and that her symptoms were part of this reaction. The group

leader, a psychologist, recommended a psychiatrist, who started her on an

antidepressant. Within 4 months, she was off all medication and leading a

normal life.

Depression is the most common coping problem in lupus. Lupus itself and some

of the medications used to treat the disease can induce a clinical chemical de-

pression. Additionally, lupus patients can develop a reactive depression: they

are upset that they have the disease. In the simplest terms, depression is a feeling of helplessness and hopelessness. It is characterized by spells of crying, loss of appetite (or increased appetite), nonrestful sleep, loss of self-esteem, inability to concentrate, decreased social interests, indecision, and loss of interest in the outside world. Physiologic signs and symptoms such as headache, palpitations,

loss of sexual drive, indigestion, and cramping may go along with depression.

Depression affects your body, mood, relationships, and physical activities.

Some suggestions of ways to cope with depression are detailed in the next

section. First, your doctor should verify that the depression is not due to central nervous system lupus or medications you are taking. For example, steroids both

induce and help depression. Chemical or biological depression is treated differently from reactive or psychological depression.

HOW TO COPE BETTER

Depression, fear, and anxiety are the most common reactions noted in SLE

patients. How should they deal with these emotions? How can they cope better?

Adequate coping requires taking action, and several good approaches are avail-

able.

Goals and Attitudes

If you are a lupus patient, your first step is to define and try to assess what is bothering you. Professional help may be needed to do this. Then you deal with

these concerns by listing realistic goals and expectations. Develop a method for problem solving: problems can be eliminated, circumvented, modified, or

worked out. Use all your available resources: financial, personal, and intellectual.

Be willing to reassess if you cannot meet your goals or expectations. Don’t try to change others; try to change yourself. Set realistic goals for yourself to improve your quality of life. Pace yourself and allow for periods of activity that alternate with periods of rest. Ask yourself what hopes you have and—if they