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Lupus and Emotions


Lupus and Emotions
By A. G. Moore

Before lupus came into our lives we all had personalities. We had histories and experiences which determined how we would react to a set of circumstances. Each of us had a profile so unique that psychologists and psychiatrists could only guess at what made us “tick”, what defined our unique set of personality traits.

Then lupus intruded. Whether or not the disease affected our nervous systems, and in lupus that effect can be seen in more than 50% of the cases, we reacted to the new circumstance. How we handle challenges, especially the particular challenge of being ill, became paramount.  We weren’t just ill; we had been told we had an incurable disease, one that resisted treatment and diagnosis.

Perhaps, because of lupus, we couldn’t work anymore. Perhaps there were insurance issues and we couldn’t afford the treatment we needed. Perhaps those who loved us and upon whom we depended for emotional support were not “there for us” or, even more difficult, were disappointed that they were drawn into the new drama that had been scripted into our lives.

Before considering lupus as a disease that affects emotions organically, we have to consider the social and psychological context of the disease.  I think this is too hard  a chore to accomplish by ourselves. And a rheumatologist cannot give in-depth consideration to our emotional state; this is neither part of the rheumatologist’s training nor does the doctor have time in the space of an office visit to deal with complicated emotional issues. If mood or significant emotional disruption has become part of your disease, than a mental health professional should be consulted–and not just any mental health professional. You should seek out someone who specializes in treating patients with chronic diseases, ideally patients who have lupus.


In just about every study on quality of life and chronic disease, lupus patients score lower than patients with many other illnesses. Researchers may guess as to the reason for this poor outcome, but no one knows exactly why the results pan out like this. One of the reasons seems to be connected to the diffuse symptoms that lupus elicits and the fact that these symptoms are poorly controlled. Another very important and unavoidable explanation for poor quality of life in lupus patients is the way the disease acts on the nervous system.

More than most patients are aware, lupus can have a direct, inflammatory effect on the nervous system. The Lupus Foundation website describes the three parts of the nervous system that can be affected. As the Foundation explains, this aspect of lupus is not always easy to diagnose, although some objective tests exist to help. These include: positron emission computed tomography scan (SPECT), EEG, MRI, CT and Spinal tap. According to the Foundation, the SPECT test is most likely to show an abnormality, if it exits, because this test can trace blood flow abnormalities.

Lupus Internationa also has an excellent section on CNS (Central Nervous System) involvement in lupus. This site explains that it was once thought that only 25% of people with lupus experienced CNS involvement. However, now that the subtle CNS manifestations of lupus are recognized (cognitive dysfunction and headache, for example), also recognized is that fact that “many” people with lupus experience CNS symptoms.

Since the objective tests for CNS involvement are not always definitive and the exact way in which lupus affects the nervous system is not clearly understood, the best option for someone who suspects they are experiencing this problem is to consult at least three specialists: a rheumatologist, a neurologist and a psychiatrist with experience in treating lupus patients.


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