Psychosocial Aspects of Lupus
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 lupus patients, 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 article describes concerns typically raised by people confronting 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.
Seeking a Diagnosis
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.
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