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- 6. Psychosocial Aspects
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Publication Date: May 2001
Revised September 2006
Lupus: A Patient Care Guide for Nurses and Other Health Professionals
Chapter 6: Psychosocial Aspects of Lupus
- Seeking a Diagnosis
- After the Diagnosis
- Living with Lupus: Key Issues
- Living With Lupus: Developing Effective Coping Skills
- Living With Lupus: A Brighter Tomorrow
Lupus is a chronic disease that defies easy description. A diagnosis may not be made for a long time. Diagnostic difficulties coupled with the serious, chronic nature of the disease present the patient, family, and the medical team with many challenges. For people with lupus, psychosocial issues can be a major part of living with this illness.
Health professionals need to be aware of these issues to achieve excellent, comprehensive care of people with lupus. Because lupus is a chronic disease of flares and remissions, each exacerbation of the disease can raise new issues of coping for the patient. This chapter describes concerns typically raised by people with lupus and their families. Each of these concerns is an opportunity for the nurse or other health professional to provide education and to help people explore feelings and resolve problems.
It may take some time for a patient to be definitively diagnosed with lupus. During this time, patients may be confused or frustrated by the seeming inability of the doctors they visit to confirm the diagnosis. They may ask, “Why don’t the doctors know?” Part of the difficulty, both for the patient and the doctor, rests in the fact that the diagnosis may seem to be hiding in a forest of confusing, vague, or changeable symptoms. A patient may express some of the following sentiments or frustrations:
“My symptoms are bizarre—they’re here today and gone tomorrow.”
“I can’t put a handle on my symptoms. I’ll have one today and a totally new one tomorrow.”
“No one seems to believe me. My family thinks it is all in my head and they want me to see a psychiatrist. I am beginning to wonder if it is all in my head.”
Before a diagnosis is made, many of a patient’s primary needs are emotional. A lupus patient will, in all likelihood, be on intimate terms with her or his symptoms long before their cause is known. Realistically, she or he is the best authority on these symptoms. A patient may feel frustrated if, after describing symptoms, others do not respect her or his knowledge or do not share the conviction that something is wrong. If the doctor, family, or friends are unsupportive, the patient’s fear, anger, and sense of isolation will only increase. These feelings add stress, which in turn can exacerbate the disease.
Health professionals can help ease these feelings by showing empathy during this difficult time and by reassuring the patient that the symptoms are real and merit serious attention. In addition, treating the patient as a whole person, and not just as a subject with a disease, can be immensely valuable in establishing a trusting relationship with the patient. Such a relationship will help the patient speak freely about symptoms or concerns that she or he may have been unwilling to discuss previously.
Patients will certainly experience a sense of relief once their condition is finally given a name and a tangible identity. At the same time, other emotions—anger, fear, depression, confusion, grief—may also surface. Patients may express some of the following sentiments:
“At last—a diagnosis! Now I know why I feel the way I do.”
“I’ll never be able to make plans, because I don’t know what tomorrow will bring.”
“I feel guilty for having lupus and for all the trouble it’s causing my family.”
“Should I tell everyone or keep it quiet?”
“Will I lose my job?”
“I hate this disease. It’s destroying my life and my family.”
“Will I die soon?”
“Will I ever be able to have children?”
“How will we pay all these medical bills?”
After the diagnosis, some patients will have an insatiable desire for information about the disease; others may need to work through intense emotions before they can come to grips with their illness and begin to cope productively. The rapport that the health professional has established with the patient can now be used to provide the patient with information, resources, and an accepting atmosphere in which to adjust emotionally. This rapport can set a foundation of hope.
Every day, the patient living with lupus confronts a range of issues, from the emotional reactions of a spouse, children, or work colleagues to her or his own fluctuating physical and psychological state. The thoughtful and sympathetic health professional can contribute greatly by helping the patient see these issues objectively, understand that they will come and go over time, and develop effective coping skills.
One of the most important emotional issues that people with lupus grapple with is the ongoing and changeable reactions of those closest to them: parents, a spouse, or children. Understanding family dynamics can help the health professional work with the patient to develop positive coping strategies.
Parents of a lupus patient may react by smothering or—the other extreme—by not taking the disease seriously. Because lupus may be genetic, some parents may feel guilty for having “given” their child the disease. The patient may hear sentiments such as:
“Oh, my poor baby, let me take care of everything.”
“Don’t make such a big deal of it. Just shake it off.”
“If it’s genetic, I must have given it to you.”
Spouse or Partner
A spouse or partner often experiences many of the same strong emotions the lupus patient does. Grief, fear, and anger are common emotions for spouses or partners as they deal with the patient’s changing physical condition. Well-established roles and responsibilities within the family may change, leading to confusion or conflict. These changes and feelings can affect the daily workings of the relationship, even threatening its foundation:
“I want you to get well. I want you to be the same as when I met you.”
“I’m afraid you will die and leave me and the children.”
“I’m confused. Our roles keep changing, and then changing back.”
“It’s hard doing my job and yours, too. I’ll never learn how to do the work around the house well enough to suit you.”
“I’m angry that you feel sick all the time and can’t do what you used to. I feel guilty for being angry.”
“Lupus has damaged our sex life. You’re always too tired, and I’m afraid I’ll hurt you.”
“I need to mourn our losses, too.”
It is difficult for the children of a lupus patient to deal with the large and complex issues raised by having a sick parent. Some of these issues are tangible, whereas others are scary precisely because of their abstract, unknown nature. Because younger children have difficulty articulating their feelings and concerns, these emotions may go unnoticed or may be acted out in negative or disruptive behaviors. Older children with younger siblings may feel resentment as well as concern. Children’s fears and feelings may emerge in statements such as:
“We never play anymore because you’re always tired or sick.”
“Is something terrible going to happen to you? Will you go away forever?”
“You’ve denied me my childhood. I don’t want to be responsible for my little brother all the time.”
The Patient’s Own Physical and Emotional State
The physical repercussions of lupus, such as fatigue, weight gain, or an increased sensitivity to sunlight, can trigger intense emotional reactions. The following sentiments illustrate some common physical and emotional experiences of people with lupus:
“Nobody understands how it feels to be this tired.”
“I feel like I’m trying to move through molasses. Even my bone marrow feels tired.”
“No matter what I do or how much sleep I get, I still wake up tired.”
“Between pain, stiffness, and fatigue, I feel like an old, old person.”
“Why do I look so awful? I don’t even look like myself.”
“I don’t want anyone to see the rash on my face.”
“I used to have beautiful thick hair.”
“I hate the fact that I eat so much, but this medicine makes me hungry all the time. I keep gaining weight.”
Physical and Mental Abilities
“I’ve always loved sitting out in the sun. Now I can’t anymore.”
“I can’t do the outdoor recreational things I used to do. I feel I’m letting my family down by not being able to play outdoors with them.”
“Does anyone else have memory lapses? I’m afraid something terrible may happen because I’ll forget something really important.”
“I’m always on the verge of tears.”
“I don’t want to leave the house.”
“I can never make plans, because I don’t know what tomorrow will bring.”
“Sometimes I think my family and friends would be better off without me.”
“I’ve taken too much sick leave at work.”
“Should I tell my boss I have lupus? I’m afraid I’ll lose my job, and we really need the money.”
“Will I pass the disease on to my children?”
“What will happen as I grow older? Am I going to die from this disease?”
Many people with lupus go through phases in which they feel that control over their life is slipping from their own hands into those of an unpredictable and unpleasant disease. This sense of powerlessness can occur not only during flares but also during periods of recuperation and remission. It forces the patient to choose between two options. This choice may be made many times during the course of the illness.
The first option is for the patient to submit to the disease and accept lupus and a lifestyle of illness as her or his identity. This choice may appear attractive to a newly diagnosed patient who is exhausted from the long battle of uncertainties related to lupus or to a long-term patient who is exhausted from fighting the disease. However, this option offers a life of self-pity, negativity, and significantly diminished horizons.
The second option is for patients to create a new identity based on reworked, realistic goals and expectations. Inherent in this second option is a sense of greater control, an improved self-image, and a positive and hopeful attitude. This option requires imagination, resilience, and determination, and depends heavily on the existence of an adequate support network that can reinforce gains and buffer the occasional disappointment. This option offers true quality of life. Perhaps the greatest gift that the health professional can offer patients is the opportunity to choose this second option. This gift can be given in several ways.
Help Patients Gain Control Over Feelings and Emotions
Patients must first assess their needs and the needs of those around them; evaluate their personal strengths, resources, and weaknesses; and develop effective communication strategies for dealing with family, friends, and the health care team. The health professional can assist the patient or suggest other professionals who can help. Many health professionals—for example, nurses, health educators, psychologists and psychiatrists, social workers, and occupational and physical therapists—are experienced in rheumatology and lupus. These professionals can educate family and friends about the needs and circumstances of people with lupus. The health professional can also encourage the patient to seek out other supportive mechanisms, such as:
- local support groups
- educational and self-management programs offered by the Lupus Foundation of America, the Arthritis Foundation, and the SLE Foundation
- pen pals.
Help Patients Gain Control Over Their New Physical Limitations
People with lupus need to accurately assess their pain and fatigue levels and understand how changes in these levels will affect their ability to work, play, and carry out activities of daily living. Health professionals can help patients develop an effective self-management program that sets out achievable goals, realistically paces activities, and avoids over commitments.
Help Patients Gain Control Medically
Doctors, nurses, and other professionals involved in lupus care can teach patients about many medical aspects of the disease, such as warning signs of an impending flare (the patient may have much to contribute to this discussion), medication use, possible side effects, and warning signals for contacting medical personnel. Nurses can also teach strategies for communicating with the health care team. This knowledge and these strategies will help the patient gain a sense of increased medical control over the disease. The Patient Information Sheets in Chapter 7 can help with this process.
Research advances are increasing the understanding of lupus and leading to improved treatments and medications. These advances and a growing body of practical experience in living with and controlling lupus point to a prognosis for people with lupus that is far brighter than it was even 25 years ago. Nurses and other health professionals who work on a continual basis with people who have lupus can have significant roles in improving the emotional and psychological status of patients so that they can take advantage of this brighter tomorrow.