Living with Lupus: Women and Chronic Illness in Ecuador

1. Introduction

Chapter One Introduction In 2000, Rosa Quitasaca, an Ecuadorian woman of “humble” rural origins living in the third largest city in the country, fell seriously ill. Rosa, who was in her forties, was known to be emotionally sensitive and physically delicate, and she often complained about the sadness and exhaustion she felt because of the multiple trials and burdens in her difficult life. Given this, at first, no one in her family really paid too much attention to her complaints. Her symptoms came on rather slowly, starting with fatigue and the seemingly normal aches and pains of aging. But then, almost overnight, things spiraled out of control. She was unable to get out of bed unassisted, lost weight very rapidly, complained of relentless pain, and often seemed dazed and confused. Rosa’s children, ranging in age from seven to twenty years old, grew increasingly alarmed as they watched their mother’s health decline precipitously . Terrified that she would die, they took her to several doctors who tested her for a range of cancers, including lymphoma and leukemia, but for months she was left undiagnosed and with little medical reassurance. She was given multiple blood transfusions and an assortment of medications, and despite temporary improvements accompanied by hope that the doctors had finally found the cause, nothing helped for very long. These false diagnoses embittered both Rosa and her children, all of whom became disillusioned and distrustful of doctors. Eventually her kidneys began to fail; her heart tissue inflamed, making it difficult for her to breathe; and she had several frightening seizures, one of them at home with only her three youngest children present. Then, more than a year after her first symptoms and several months of very serious health complications, Rosa was diagnosed with systemic lupus erythematosus (SLE), a chronic autoimmune disorder. Once diagnosed, it took more than two years for Rosa’s condition to fully stabilize, and she was in and out 2 | Living with Lupus of hospitals several times during that period. Like most lupus patients, she was put on a complicated daily regimen of prescription medications, including the steroid prednisone and immunosuppresants. She was instructed to watch her diet and encouraged to avoid direct sunlight, as sometimes lupus patients can have a severe reaction to ultraviolet (UV) radiation. SLE or lupus is an autoimmune disorder whereby the body’s immune system loses the ability to recognize the difference between foreign bodies (antigens ) and healthy cells and tissues. Unable to differentiate self from foe, as it were, the immune system then attacks healthy body tissue, particularly connective tissue. Lupus usually starts with fatigue and joint pain, but if left untreated, it can cause irreversible tissue damage. SLE is “systemic” in that tissues throughout the body can be affected, including internal organs and the brain. Given how long Rosa went untreated, she was very fortunate that her kidneys recovered from the sustained inflammation. Under the best of circumstances, lupus can be difficult to diagnose, as there is no single test that confirms its presence, and the course it takes in any individual is unpredictable. No two cases of lupus look exactly alike, and the range of possible complications is so vast that the illness creates confusion and frustration. As Rosa’s daughter describes it, “First it was one thing, and then it was everything. You never know where it will go next.” Even with treatment, lupus is characterized by periodic “flares” and remissions, and patients can go days, weeks, or even months in relatively good health, followed by a “flare” that has them exhausted and in pain. Factors that can trigger flares are idiosyncratic and can include too much exposure to UV radiation, a viral or bacterial infection, or physical or emotional stress. While there is some evidence that a tendency for lupus runs in families, the evidence is also clear that the genetic connection is a complicated one. By the time that Rosa was diagnosed with lupus, her family had already been torn apart by the forces of transnational migration. In 1995, looking for economic opportunities that never seemed possible in Cuenca for those without social standing and palanca (leverage), her eldest son Vicente joined the thousands of poor Cuencanos who had moved to New York in search of work. Rosa never seemed to emotionally recover from her son’s departure, as he had long been her closest and most trusted confidant. The early years of Rosa’s marriage had been especially difficult, and Vicente filled the emotional...