At one point, Tina Wagner seemed like any other young ambitious woman in her 30s. Success and a dream life were within her grasp. “I felt like I could do whatever I wanted to do in life. The only limits I had were the ones I made. I was extremely ambitious, goal oriented and took on life head-on. I constantly took trips, was extremely active and loved doing outdoor sports and activities. “I was a social butterfly who loved spending time with family and friends,” says Wagner. However, that dream life felt as if it vanished in 2016, when Wagner was diagnosed with lupus nephritis, an autoimmune disease that causes inflammation of the kidneys. The diagnosis came when Wagner was 33, and since then her life never has been the same.
“I was in the process of starting my post-graduate education. I was student teaching, working more than 50 hours a week, while running two offices, and was an administrative volunteer for a local fire department,” Wagner says. “Upon diagnosis, I had to put my learning and teaching on hold. I could no longer afford the additional stress on my body. I was barely able to work 40 hours a week, but I had to keep my job for health insurance and to pay for my costly medications.”
A Lupus Foundation of America membership survey found that two of three lupus patients reported a complete or partial loss of their income because they no longer can work full time due to complications due to the disease. One in three has been disabled temporarily by the disease, and one in four currently receives disability payments.
Wagner validates this by saying, “The things I knew I was good at were taken away, and it shook me to my very core. I constantly second-guess myself and my ability to even accomplish the simplest tasks such as bathing, getting dressed and eating when I am having a difficult day.” According to the Mayo Clinic, lupus is a systemic autoimmune disease that occurs when the body’s immune system attacks the tissues and organs. Inflammation caused by lupus can affect many body systems including the joints, skin, kidneys, blood cells, brain, heart and lungs. While there is no cure for lupus, treatments can help control symptoms. Aside from her physical health, lupus also chipped away at Wagner’s self-esteem.
“Having lupus has affected my self-esteem as it is a cruel, unpredictable disease,” she says. “When I believe I may be doing better and set a goal, something happens, like getting a blood-clot, vasculitis, or another lupus complication and it completely deflates my self-esteem,” she says. “It’s as if I may catch a glimmer of my former life and then it slips away again, and it forces me to re-examine my goals. I sometimes feel useless, which would never have been a term that I would have used to describe myself prior to diagnosis, and I am no longer confident that I can accomplish any task on a given day as I am at the mercy of my failing body. It is a constant mental and physical roller-coaster.”
After going into acute kidney failure, doctors determined that chemotherapy was the best option for Wagner. Although the treatment was successful in helping to manage her symptoms, Wagner has not been in a state where she is not without some form of flare or symptoms. While she believes that most people in her life are understanding, it is obvious that some days they grow impatient with her and think that she will just “snap out of it and get better.”
According to The Centers for Disease Control and Prevention, six out of every 10 Americans suffer from at least one chronic disease that affects their daily lives. Diseases such as lupus are often referred to as invisible illnesses because the pain many patients feel is not visually apparent. Although lupus is a widespread disease, awareness of the disease lags many others and therefore the severity of the illness is less acknowledged. The fact, however, remains that lupus is a devastating and life-changing disease that currently has no cure.
Considering the many aspects of control that lupus has over Wagner’s life, she has made a conscious effort to not let lupus define who she is. She sets goals and works hard each day to achieve even the smallest ones at her own pace. Although she does not know what lies ahead, she continues to soar against the wind and to face whatever challenges come her way. “Despite outward appearances, those who suffer from lupus are fighters. Every day is a battle and we go to war against our disease. Things may look normal on the surface, but there are big things going on inside our bodies. We don’t expect people to understand what is going on under the surface, but a little compassion can truly go a long way,” says Wagner. ′
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