Living With The Physical and Emotional Pain of Lupus

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Dr.Jerry Simon

Sunday, 17 April 2011 02:30

By Dr. Jerry Simon

In the HAMA movie “No Seed,” a ruthless prime minister was brought down to earth by the combination of her corruption and a dreaded disease.

The prime minister in question was a woman, and the disease was lupus. However, far from being a punishment for corrupt female politicians, lupus is a disease that affects millions of women worldwide, from all walks of life.

Is it interesting that it was featured in an Antiguan movie, for although it affects much more than a few women in this country, the disease generally gets little attention here. Even considering its gravity and the expenses involved in its treatment, it is not one of the diseases covered under the Medical Benefits Scheme. Unlike the rich prime minister in “No Seed,” most women here affected with lupus cannot fly out to New York or London to get treatment.

Systemic Lupus Erythematosus (commonly called lupus) is a chronic disease that affects just about every organ in the body. Notably, it affects the joints, the skin, kidneys, heart, and causes blood abnormalities. But general symptoms such as fever, malaise, anorexia, and weight loss are often present.

For a person living with lupus, problems can range from joint pains, vision defects, skin lesions, blocked or ruptured blood vessels, excess collection of fluid in the abdomen and legs, and seizures and strokes, to heart, lung, and kidney failure. Even when we add depression and psychosis, this is still only a short list of the problems faced by many lupus sufferers, about 85 percent of whom are women.

The exact mechanisms whereby lupus is caused are far from being understood, however several factors have been identified that influence its prevalence. These include genetic inheritance, gender, race, and several environmental factors.

Though it does not mean if you have lupus your child is going to automatically get it, the familial occurrence of lupus has been reported with frequency. This genetic infuence can be seen amongst people of Barbudan heritage, where a relatively high incidence of lupus is seen. This would provide an ideal population group to do an epidemiology study of the disease.

The factor of gender has been clearly established, where overall, only about one in nine lupus cases is a male. Sex hormones appear to play a role, since most cases develop after puberty and before menopause. Interestingly, among patients who develop lupus during early childhood or after age 50, the gender distribution is more equal.

In the United States, where the race factor has been studied, it was found that it is less common among Whites and more prevalent in other races. For example, it occurs in about one in every 1,000 White women, but one in about 250 Black women.

Certain medications have been implicated in causing lupus or lupus-like syndromes. These include procainamide (used to treat certain heart diseases), hydralazine (used in the treatment of high blood pressure), and isoniazid (used in the treatment of TB). Generally, the lupus-like features disappear when the drugs are withdrawn, but one has to appreciate that some people take these drugs over a long period without realising the connection.

One of the problems that makes life difficult for lupus victims is that its diagnosis is not always straightforward. In fact, lupus is described as the “Great Imitator” because it can mimic so many other diseases. Even though there are established criteria for its classification, the many pitfalls that may be encountered in pinpointing the diagnosis means that many lab tests have to be done. These tests are often quite expensive, and are not always readily available here.

Keeping up with lab testing is a constant struggle for lupus victims, because to effectively manage the condition, the treatment has to be individualized. Hence, constant checks have to be made to gauge the progress of the disease and the patient's response to treatment. It is especially important to monitor the condition of the kidneys, but there are so many complications that can lead to the demise of a lupus patient.

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For many women, living with lupus means living with persistent or severe acute joint pains. Physicians describe this as a nondestructive and non-deforming arthritis, but that does not mean that it does not severely affect the quality of life of the patient. This often prevents them from exercising effectively, and hence reduces the weapons they have in fighting the disease process. Simple acts such as writing, bathing, getting dressed, and lifting a small child become quite difficult chores.

To make matters worse, the medications used to treat pain often have detrimental effects on the kidneys, liver, and heart. Therefore, it is a fine balancing act to establish equilibrium between pain relief and protecting vital body organs. In fact, the more severe the disease, the greater the risk of drug-induced complications.

Steroids that are often used to treat lupus can contribute to blocking the arteries and lead to death by heart attack. Also, these medications can contribute to bone degeneration, predisposing the patient to hip fractures. Additionally, the increased use of medications that suppress the immune system means the patient runs a greater risk of developing life-threatening infections. Presently, the leading cause of death among lupus patients is infection. These infections may be benign in the average person, but are detrimental to the lupus patient. 


It is not uncommon for lupus patients to be severely depressed due to the debilitating nature of the condition. Just imagine a person who is constantly too weak, fatigued, or in far too much pain to work. Imagine the emotional and at times financial strain it puts on the family life of that wife or mother or even (in much less common occasions) that father or husband with lupus.

Hence the reason for this article. It was inspired by one of my patients whose mother had died of lupus, whose son has been diagnosed with lupus, who has siblings and cousins with lupus, and who has been battling lupus for many years. She is not looking for sympathy, but rather she wants to help others to cope with lupus like she has learned to. The only difference is, she does not want them to have to go through all the struggles she had.

She is indeed a remarkable woman with great courage and strength, and wants to start a support group for lupus sufferers. She has beaten many odds and she believes many others can beat great odds if they get the support they need.

She knows when we are together, our sorrows are divided while our joys are multiplied. Together, living with lupus does not have to mean living with pain. If you or someone you know suffers from lupus, please feel free to contact us at the email address or number below.

Dr Jerry Simon (NSA Medical Surgical and Rehab Centre, This email address is being protected from spambots. You need JavaScript enabled to view it. ,  This email address is being protected from spambots. You need JavaScript enabled to view it. ,  268 462 0631).

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