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SOURCE: National Institutes of Health, U.S.Department of Health and Human Services: Link to NIH

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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 tum 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.

Source: National Institutes of Health, U.S.Dept of Health and Human Services

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