Find inspiration and hope in these stories about people whose lives have been profoundly affected by lupus. Here we meet Elissa Giffords, a professor and community activist who gathers the daily strength to teach others about social work.
One Woman’s Journey from Diagnosis to Doctorate
Relieved to Be Labeled
Until she got the diagnosis of systemic lupus at age 26, parents and friends—and even doctors—told Elissa Giffords that the relentless aches and pains she felt were just “in her head.” As a girl, she had endured low-grade fevers, fatigue, and persistent discomforts throughout her body. In adolescence, she wore braces on her legs to help alleviate pain and instability in her knees.
Overall malaise and fatigue never really departed—a far cry from the feelings of strength and invincibility that so many teenagers experience. Elissa spent over 10 years going from doctor to doctor in search of an explanation.
“Was I just born funny?” she wondered to herself. “Or do I have some strange, unknown disease?”
Those questions were put to rest in 1992, when she was finally diagnosed with systemic lupus.
Retreat from the World
Elissa’s early journey—more than a decade of uncertainty before the tentative relief of knowing what was really wrong—is on the long side for the more than 1.5 million Americans with lupus. Most young people live with symptoms for about three to five years before a diagnosis of lupus is made.
“For all those years, no one would believe me when I said I was hurting all over. I looked just fine. But when I got the diagnosis,” the 41-year-old Hicksville, NY, resident explains, “it meant all these weird symptoms finally had a name. A diagnosis…what a relief! All of a sudden, it was as if I received some magic kind of validation. To have that label…it was very freeing.”
Unfortunately, the disease had just started to take its toll.
At the time of her diagnosis, Elissa was in the process of getting her Masters in Social Work and working part-time as a social worker, addressing such issues as social justice, disability rights, homelessness, and the need for universal health care.
Soon after the diagnosis, she developed inflammation around the heart. Called “pericarditis,” the condition causes sharp pains and sensations of pressure in the chest. ‘It’s horrible,” describes Elissa. “You can’t breath. Sometimes it feels as if you’re gasping for air.”
Undaunted, she began working full time and studying for a doctorate in social work. But then sharp and stabbing stomach pains developed. She had yet another complication of lupus—“serositis”—an inflammation around the lining of the stomach.
A few months later, a “weird tingling” on the tip of her nose gradually spread to the area around her mouth, eyes, top of the head, arms, and feet. “I got weird flashes of light in my vision and what I saw was sometimes blurry or gray,” she describes. “As time passed, I began having trouble processing information. I was getting confused and forgetful.”
The cause of these symptoms, her doctors said: central nervous system lupus. “I lost the next three years of my life,” she explains. “I had to take time off from work go on medical leave from school. I had difficulty carrying on a simple conversation. And my perception and balance were off.
“By the time I grew to understand the depth, breadth and scope of the disease, it had already affected my brain – so I didn’t know better!” she jokes.
Acceptance of One Kind—and the Power of Connecting
“And then, at some point, I just sort of accepted it all. I stopped fighting—and that’s when I started to heal,” she explains. “It was a lesson I had to learn myself, and it was by accident, I suppose. I think I was just tired of fighting to have my illness recognized. For so many years, I had to fight my body, my family, and my friends.”
So Elissa let her body rest. “Stopping the fight was the hardest thing, because I like to be in control. But I did it. I gave up control. I am a survivor,” she adds. “Maybe I am naïve but it never occurred to me that I wouldn’t get better.”
Living alone and unable to drive because of her eyesight and brain involvement, Elissa was nearly homebound for months. The Internet became a lifeline—a link to the outside world and to people who could truly identify with what was happening to her: other people with lupus.
“Having lupus can be very, very isolating. Many of my friends disappeared,” she explains. “But on the Internet, I found others with the disease. The group of women I met online—first in an online message board and then in an email group that we called “our circle”—was always available. They gave me an insider’s view of life with lupus and suggestions for coping. These were unique perspectives that I think you can only really get from other people living with the disease.
“We could write an email or post on the message board day or night. Often someone would answer within minutes. There were times when several of us were online at the same time and had an impromptu chat session. We talked about strategies for scrubbing pots and pans when you’re so exhausted you can barely lift your arms. We talked about symptoms. We talked about everything—more than just lupus.”
Elissa also connected to others with lupus through her volunteer work. She gave her time in various settings, serving on the Board of Directors of the Long Island/Queens Chapter of the Lupus Foundation and taking part in health fairs.
“I find the general public has very little knowledge about lupus,” she explains. “I like talking to people about it and directing them to literature and workshops and seminars. I really feel like we made a difference by making information about lupus available to more people—especially families.”
Reemerging with Vigor
Eventually, Elissa’s central nervous system symptoms faded, and today she has her doctorate and teaches full-time at a local university. She also serves on several community boards—including one that focuses on efforts to gain access to healthcare for underserved people—and is involved in collaborative advocacy efforts to improve service delivery at the local Department of Social Services.
In 2004, Elissa was awarded the New York State National Association of Social Workers Social Worker of the Year Award.
“It’s been a steep climb but so far I’m making it,’ she explains. “I feel so lucky to be active in community service while helping to educate the social work professionals of tomorrow.”
“And so far, I’ve been able to overcome this battle with my immune system,” she says. “I’ve worked myself back, perhaps even exceeded my own expectations for my career.”
Good Days and Bad Days
Elissa’s long journey with lupus reflects much of what can happen with this chronic disease, with weeks or months of remission followed by unexpected flares that sap energy and create myriad physical challenges.
“While everything looks O.K. it’s not perfect. I still have my good and bad days. For instance, right now I am dealing with nausea and sharp, stabbing pains in my abdomen that the specialists can’t find the cause of. It’s been horrific. I’ve had to increase my steroids temporarily and reduce my day to day activities. Such is life with lupus.”
It is when she is feeling stronger that Elissa works on strategies for making it through the harder times, and for helping others with her determination and sharp mind.
“I do feel lucky,” Elissa explains. “Unlike many people, I have the luxury of having some flexibility with my time because of my profession. I can do a lot of work on my home computer. On some days I can even work in my pajamas. As long as I teach my classes I can do most of the rest of my work nearly anytime—10:00 in the morning or 10:00 at night, it doesn’t matter.
“And I rarely schedule early morning meetings!” she says, because of intense fatigue that makes it very hard to get going. “Mornings are like that for many people with lupus.”
Finding a ‘New Normal’
One day, people will figure out this disease, Elissa says. “Until then, those of us who live with it have to identify what helps us to cope and learn ways of adapting to it.”
Everyone’s plan or strategy will be different, because lupus affects every person differently. “My strategy was to redefine my life goals and find a ‘new normal’ for myself. This was really hard to do, but it really made a difference.”
Elissa initially set out to get a doctoral degree to advance her knowledge of social work. Her dream was to work in the community with or on behalf of clients. She even thought that one day she would run a social services agency.
“But when I got sick, I had to stop working—and all I had left was school. As I was beginning to heal, I was able to return to school – but not work. Eventually I had small opportunities on campus that eventually led to an opportunity to teach. I absolutely loved the experience!
And so she uses her doctoral degree to teach yet another generation of social work students. A full-time position at a university enables her to continue working with the community, but with students as well—which she had come to love.
“In some ways the work is more demanding than a traditional full-time position but I do have the luxury of using some flex-time,” she explains. “This enables me to rest when I need to and work feverishly when I am able.”
Speaking as a lupus patient, teacher, and as a social work expert, Elissa advises people with lupus to reach out. Find a social worker. Join a support group. Learn about the disease. If possible, donate time or money to lupus organizations.
“And if you can,” she adds, “find your ‘new normal.’”