“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.”
A definite diagnosis of lupus may take time. Patients may get upset about the lack of a confirmed diagnosis. They may not understand why the doctor(s) cannot figure out what exactly is going on. The main issue lies in the fact that symptoms change and may be confusing for both the patient and the doctor(s). The patient may become very emotional. The patient knows his/her own symptoms very well, but may begin to doubt what is going on due to the lack of diagnosis. He/she may begin to wonder if everything he/she has been experiencing was imagined because doctors, friends, and family members do not understand what he/she is going through. He/she may feel isolated, angry, or even fearful. This will only add to the amount of stress, which we established earlier, exacerbates the disease process.
It is important for health care providers to understand the disease process of lupus in order to be empathetic during this difficult time in order to reassure the patient and help him/her understand that what he/she is going through is real and it warrants serious attention. The health care providers also need to be educated to treat the patient as a person, not an illness. This can create a wonderful relationship of trust and respect between the patient and the provider.
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