Living with Lupus
As a child, Sandra Bettinger, now 55, was never allowed to use her lupus as an excuse for anything.
On school mornings, if Bettinger was feeling fatigued or simply didn’t want to deal with bullying classmates mocking her swollen body, she would desperately devise a plan to stay home. Standing in front of the air conditioner, shivering, she would hope for little white polyps to form on her tonsils or some other physical signs of her illness to appear.
“Look Ma,” Bettinger would say in their absence, hopeful she could pull off the ruse. “I’m sick.”
But before her mother could answer, her father’s deep voice would boom from her parent’s bedroom: “You are going to school.”
Throughout her childhood, Bettinger says her father challenged her whenever she claimed to feel sick. He learned to identify when her confessed fevers were real and when they were not.
“It’s all in your head,” he’d tell her when he suspected she was lying.
Fearing her symptoms would be challenged by her father, Bettinger began to keep them to herself. Over time, she started keeping her symptoms hidden from everyone.
Bettinger’s lupus became a dangerous secret.
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Systemic lupus erythematosus is an autoimmune disease characterized by an overactive immune system that mistakenly attacks healthy tissue and organs in the body, including the skin, joints, kidneys, lungs, brain and heart. This causes an unpredictable range of symptoms such as fatigue, rashes, joint inflammation, muscle pain or organ failure, some of which can lead to death.
The exact cause of lupus is still unknown, and in most cases, the afflicted have never heard of the disease before their diagnosis. Research indicates patients may have a genetic predisposition to it that may be activated by environmental factors, such as stress, infections, certain medications or sunlight. While Lupus can strike anyone, 90 percent of its victims are women and most of the initial diagnoses occur between the ages of 15 and 44. Bettinger was first diagnosed with lupus at the age of 10, after she developed a rash across her face, known as a "butterfly rash."
As she got older, Bettinger went to great lengths to hide her symptoms. In graduate school, she sometimes wore long white cotton gloves, long sleeves and a hat.
In fact, her attempt to camouflage her puffy limbs on a study-abroad trip in England led to a severe flare-up of the disease that went untreated for weeks. Her whole body was swollen and she was embarrassed by her appearance. By the time she was on her flight home to New York, she couldn’t conceal her symptoms any longer and knew she was severely ill. In great pain, she was rushed to the hospital upon landing.
Bettinger was issued a high dose of Prednisone, an immunosuppressant steroid. She recovered, but something had changed. Even though she was living at home in New York surrounded by family, she felt severely depressed. Her days were spent juggling prescription medications and handling hours-long doctor’s appointments. She felt alone, and trapped indoors where the sun couldn’t hurt her.
“I was like a zombie, the walking dead,” Bettinger recently said in a raspy voice as she stubbed out a cigarette on her kitchen counter. “I had lost that one thing, [hope], that held me together, that one fiber the kept me from going over the edge, of wanting to end it. I was sick. I didn’t want to people to see me. I didn’t want to see myself. I didn’t want to live. It was more than I could take; all I could think was, I can’t live, I can’t. I’m awake all day looking at the ceiling. I can’t sleep at night. It hurts to live.”
Shortly after completing graduate school at NYU in 1982, Bettinger tried to commit suicide in her family home. She ended up in the voluntary psychiatric ward at Booth Memorial Hospital in Queens.
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According to the U.S. Department of Health and Human Services, 1.5 million Americans currently suffer from lupus, with 16,000 more developing the illness each year. Lupus is more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis, and there is no cure. However, this painful, chronic autoimmune disease remains obscure to the public. The Lupus Foundation of America states that 61 percent of Americans either have never heard of it or know little more than the name of the illness.
AIDS and lupus are both autoimmune diseases, but they differ because AIDS causes the immune system to be underactive, whereas lupus causes it to be overactive. With lupus, the immune system attacks the body. (Lupus also differs from AIDS in that it isn’t spread contagiously by a blood-borne virus, although its exact cause remains unknown.)
“It's like friendly fire within the body,” explains Dawn Isherwood, a health educator for the Lupus Foundation of America. “Rather than going after a virus or bacteria, the immune system is going after the wrong thing.”
Which organ is attacked varies with each patient. Bettinger's eyes and joints have been particularly affected.
Experts have called lupus “the great imitator” and “the trash-bin of autoimmune diseases” because its symptoms are so vague and common to many other illnesses. Not all symptoms and identifiers are present at any given time.
“Often times, as lupus is starting to develop, it plays peek-a-boo,” says Isherwood. “It’s like looking at one of those old Polaroid pictures. Until that picture becomes 80 to 85 percent developed, there may be some ambiguities as to what it is.”
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Today, Bettinger is resigned to her illness. With the help of the psychiatric treatment she received at Booth Memorial, she slowly recovered from her bout of clinical depression. But her physical symptoms persist. Lately she has been battling an inflammation of the skin around her eye.
“Life goes on,” says Bettinger, who lives alone. Her income is restricted to disability checks. "I don’t have a husband or a child, so I still sometimes battle isolation, but I try to reach out in support groups.”
It is common for sufferers of chronic illness to experience depression, according to a study published last year in the journal Social Work in Health Care, so support from friends, family and professionals is critical. However, oftentimes the supporters do not understand the illness. Not only have many never heard of lupus, but 42 percent of people in the United States do not believe lupus is disabling and fail to realize its ramifications. Many researchers and social workers believe this is because lupus is relatively invisible. Rashes tend to go away with medication, hair loss can easily be covered up, and weight gain isn’t always obvious. Symptoms like fatigue are also vague and difficult to distinguish from normal fatigue.
“People don’t look sick,” explains Jessica Rowshandel, director of social services at the S.L.E. Lupus Foundation, and a frequent leader of the organization’s Manhattan support group chapter. “If [patients] came in a wheelchair and looked really pale and their face was sunken in, maybe they would get a little bit more support. Family and friends, when they think of joint pain or fatigue, they think it means ‘tired,’ so they don’t understand why [the patient] can’t move, go to work or do the dishes.”
For this reason, Rowshandel advises patients to describe their symptoms and extreme exhaustion precisely and in a way people can understand. For example, “It feels like the flu,” or “It feel like I just ran a marathon,” or “It feels like two tons of metal are on top of my body.”
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In a grey, cramped conference room at the S.L.E. Lupus Foundation headquarters in Manhattan this March, Bettinger and seven other patients attended a support meeting on the topic of friends and family. They were seated around a wooden table with their winter coats, wet and dripping from the drizzling rain, hanging off the backs of their chairs. The meeting was attended only by those comfortable speaking in front of a reporter.
It took just a few minutes before group members began to speak openly. “I don’t think [people] can delineate between just physical exhaustion because you’ve overdone it and illness that causes exhaustion,” said one of the attendees, Kernetter Milligan, in a shy, hushed voice. Milligan is a short, 56-year-old African-American mother of three. “You find yourself constantly explaining.”
The group nodded in agreement.
African-American women are three times more at risk for lupus than Caucasian women. A native New Yorker, Milligan was diagnosed with lupus at the age of 29 after she started losing her hair. She moves slowly and with a pronounced limp from pain in her hip. During her twenty-two years working for Empire Blue Cross Blue Shield, she would leave work a half hour early to join her colleagues for lunch so she would have enough time to walk to the restaurant, just a couple blocks away, and arrive at the same time as everyone else. When the recession hit, she was laid off.
“People don’t think we’re sick because we don’t look sick,” said Mary, a shy blonde woman, who wished only to be identified by her first name. “That is the hard part with friends. Not that they are impatient, but that they’re like, 'Come on, you can do it, you look great, just get out there.'”
“I think people don’t know how to handle it when we are at our worst,” said Christina Torro, 32. Torro was diagnosed with lupus in 2002 after struggling for a long time to label her illness. Her symptoms felt like the flu: stiffness, swelling and muscle aches. She was misdiagnosed so many times that she was forced to do her own research about lupus, which led her to demand to be tested for the disease.
Torro had come to the meeting with her mother. Both mother and daughter were dressed in black and purple—the lupus awareness color—with bracelets to match. Torro has a supportive family and boyfriend, but is deeply hurt by a falling out with her best friend; the friendship ended after Torro’s illness flared up following the birth of her child two years ago.
Lupus patients can have healthy pregnancies, but require constant supervision by their doctors and are considered at high risk of preeclampsia. Torro was forced to deliver her child via emergency C-section a month early because her blood pressure had skyrocketed. After the baby was born she spent six months in the intensive care unit due to numerous complications, including seizures, failing kidneys, fluid around her heart and lungs, anemia and hemorrhages. She also underwent surgery to remove a part of her intestine that had knotted. Her mother feared she wouldn’t make it. During that time, Torro said her best friend failed to visit often and began to distance herself.
“It was like a breakup,” she said, looking visibly upset despite her attempts to appear confident. “I felt lost because I didn’t have that sister bond anymore. She had all these excuses but nothing was real. I could have really used her help.”
“It was very stressful for her,” Torro’s mother said.
“I just think people are scared,” added Milligan.
Everyone nodded. Silence fell over the room.
Rowshandel broke the quiet and said, “What are they scared about?”
“They don’t know what lupus is,” Torro’s mother replied.
Gene Galpern, 60, with short grey-white hair and glasses, was the only man in the room. He remained quiet for much of the meeting, speaking only when Rowshandel asked him a direct question. Most of the time he only nodded along with the conversation as he munched on an oatmeal raisin cookie. He had struggled to open the packaging at the start of the meeting because his hands were so swollen; Mary had to open the plastic wrapping for him. When he did finally speak, his voice was deep and raspy.
Galpern was the most recent attendee to be diagnosed with lupus. His disease is also far from being under control. Over the last two and a half years, his rheumatologist and other doctors have been experimenting with different dosages and medications to try to bring down his over-active immune system. Galpern also suffers from Type I Diabetes, which aggravates his symptoms and pain.
His life has slowed down. He said his relationships with his wife and children have been affected by this illness because he can no longer be as active as he was. He was also forced to retire early from his job as a mail carrier.
Many Lupus patients, like Galpern and Bettinger, are forced to leave work, unable to keep up with the stress and demands of their jobs. A 2009 study found that 33 percent of lupus patients were on work disability. “I worked my whole life and then, the roles reversed, basically,” Galpern said. “I was never brought up like that. I was brought up that you have to support your family and that’s the way it was. Now I’m on the other side of this. [With lupus] you’re so much of a burden on your partner sometimes.”
Often, Galpern cannot sleep because of pain, and he will move to a recliner chair in another room so he doesn’t bother his wife at night. “Last week, for example, twice in the middle of the night, I woke up screaming. I was just getting some pain from rolling in bed. I woke everybody up,” he said.
His sense of being a burden makes him feel isolated. Only the support group, he said, really understands what he is going through. “I feel pretty much worthless,” he told the group, “and that you can’t share with your wife or your kids. They don’t want to hear about it. So I try to distract myself but sometimes, I feel like I’m fooling myself. I’ll have to get up or go out. It’s almost like you think of wanting to hurt yourself, but you’re not going to do it. It’s almost like passive suicide. But I say to myself, as bad as it is, you’d be worse if you did something stupid. So I have to try to find ways to release certain things in order to stay alive, I guess.”
He tries meditation, yoga and swimming to calm himself. Swimming is one of the few exercises he can still do comfortably, and it helps with his pain. Having grown up on Coney Island near the water, the sound of waves soothes him.
Bettinger sympathized with Galpern. “Your whole life is structured around this illness that you have,” she said. “You have to think about what the weather is, or it’s too hard to do things, too hard to get dressed or you can’t put on that necklace you wanted to wear because your fingers hurt.”
“It’s a severe struggle sometimes,” Galpern said, before the meeting. “I can’t even open a bottle of Snapple. I have a tool that a friend bought me, so if nobody is home, I have to use it. Even the simplest thing [like] shaving, by the time I put the hot water on my face, my elbows are hurting from the strain of lifting. It takes your time up, your emotions, your spirit, your soul and I don’t like that part of it.” He paused, then added, “I think I’d be worse off if I didn’t have this group.”
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A week after the support meeting, Bettinger sat in her small East Side apartment, smoking; she said she is unable to quit. The walls are decorated from floor to ceiling with dolls, African masks, bows and arrows and other collectibles. Pungent incense burned in the corner by the couch. She took long breaks between drags of her cigarette; it repeatedly went out and she had to relight. Her nails painted and short, her greying hair wispy, Bettinger said she had recently recovered from another severe eye infection. She also suffers from Raynaud's syndrome, which causes poor circulation, leaving her toes purple and gives her trouble walking. She talked for hours about her dreams of being a stand-up comedian. “I want fame,” she said. “I want to be famous, for something. Maybe lupus. Maybe that will be my thing.” She showed off photographs of her past and proudly brought out her collection of lupus awareness buttons from her college days, which have begun to yellow with age. She laughed as she talked about television shows like "House" that have begun to refer to lupus, and talked about how she wished she had gone hitchhiking or backpacking when she was younger.
“I don’t know if I would say the illness defines me,” she said. “It’s part of my story, it’s not me. But my biggest thing is that ever since I was young, my freedom was taken away from me because of lupus. You’re already 21 and you’re a victim—and I hate that word, victim—[but] you’ve got to see a doctor, you’ve got to refill medication and you’re afraid of the sun. The freedom to move around and do things you want to do is gone, and now, I’m just an old lady.”
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Simone M. Scully is a New York freelance journalist and playwright, raised as an expat in Toulouse, France. She is also a recent graduate of the Columbia University Graduate School of Journalism.
Tara Israel is Narratively’s photo editor, born and raised among the local fishermen and seasonal Manhattanites of East Hampton and currently residing in New York City. You can read about some of her recent projects and see photos of the questionable company she keeps at thetisraelirepublic.tumblr.com.
Jessica Bal hails from a two-stoplight town in Massachusetts and now resides in a city with too many lights to count, where she produces media for an arts education organization and looks for any excuse to write, photograph and film stories that she’s curious about.