Living with Lupus

Twelve years ago, I was a forty-five-year-old mother of two, fulfilled and happy in my second marriage. But when some vague physical complaints began to escalate, I could no longer ignore the fact that something was definitely wrong with me. I'd wake in the morning with stiff, achy hands and arms. While the stiffness wore off within a half hour, by midmorning I was ready to go back to sleep. In the late afternoons, I got flushed and feverish. Even simple tasks such as loading the washing machine became increasingly difficult. With the help of various pain remedies, I worked through my aches and pains to do the things I enjoyed, such as cooking and sewing. But being out in the sun seemed to make my symptoms worse, so I had to give up gardening.

Making appointments with various doctors became routine—but no one seemed able to pinpoint the source of my problems. Although I'd given my heart to Christ in 1976, ending a life of rebellion and pride, suddenly I had doubts about my faith. If I'm really a Christian, I thought, why am I suffering like this? Is God punishing me for past sins? Hasn't he heard my fervent prayers for healing? My questions wouldn't go away.

Then, in the summer of 1987, I took a job as a seamstress in a drapery shop to help pay the household expenses. There I met Carol Ann, who suffered from an autoimmune disease known as scleroderma. As I shared my problems and frustrations with her, Carol began to suspect I might have one of the many types of arthritis. Although she suggested I see a rheumatologist, I knew I couldn't afford to pay another specialist.

As our friendship grew, we began studying the Bible together and praying for each other. I learned that when we as Christians go through a difficult time—be it physical, mental, spiritual, or emotional—God often provides faithful friends to share the burden. Carol Ann became that faithful friend and confidante.

By December 1988, I'd checked into a diagnostic facility to put an end to the parade of doctors who kept telling me my symptoms were all in my head. A compassionate internist listened to my laundry list of symptoms after giving me a thorough check-up. While reviewing my lab results, he looked at me and smiled. "Mrs. Graves," he said, "all your blood values are within normal limits."

My heart sank. Another dead end. I was actually disappointed at what would have ordinarily been good news. He must have read the look on my face, because he didn't wait for my reply but continued.

"There's one more blood test I'm ordering for you. I'll have the nurse call you in about a week with the results. If you need another appointment, we'll make it for you at that time."

At the end of the week, the nurse called to notify me of my appointment with a rheumatologist at the clinic. Now my concerns intensified. I knew rheumatologists took care of people who have various forms of arthritis. Had Carol Ann been right?

The rheumatologist went through my clinical symptoms carefully, then told me that the results of the antinuclear antibody test (ana) were unmistakable—positive for systemic lupus erythematosus. At the time, I didn't know how this diagnosis would impact my future, but I was relieved to discover a name for this enemy that was torturing me. Surely with modern drug therapy, I would once again enjoy a normal life. I could not have foreseen the long road ahead—or the many ways God would use this disease for his glory.

Over the next four years I struggled through allergic reactions to all the medications prescribed for me. One drug upset my stomach; another brought an intense itching all over my body. Still another caused my tongue and throat to swell.

My symptoms worsened. By early 1989, I had to quit my job at the drapery store. My family agreed that full-time work was too stressful for me. We tightened the budget to make up for the lost revenue. My husband often become annoyed at my inability to keep up with household responsibilities. My son immersed himself in his guitar lessons and practiced in his room with the door shut.

Our financial situation deteriorated as medical and drug bills mounted. We were forced to cancel my health insurance because the premiums were so high. I became uninsurable. But God has graciously kept me out of the hospital, and I pray he will continue to sustain me. Most of my doctors give me courtesy discounts on office visits, and my pharmacist has lowered prices on my prescription drugs. I do have to pay retail prices for the supplements that help me in many ways. My condition costs us about $3,000 a year.

In June 1989, Carol Ann and I cofounded a support group: the Lupus and Scleroderma Society of Central Florida. This became my focus and outlet for the frustration of battling a chronic illness. We were delighted to have sixteen people respond to that first public service ad that ran in our local newspaper. A local hospital provided a room for us and we began holding monthly meetings. We read everything available on the subject of autoimmune disease. Our local rheumatologist has provided us with slide presentations and literature to hand out. Doctors and nurses in the area have spoken to our group about lupus, scleroderma, and other related conditions.

Through a program of proper medication, massage therapy (for the muscle pain), and careful diet planning (for nutritional support), I've begun to enjoy life in a whole new way. While God hasn't chosen to heal me completely, I now have a positive, grateful outlook on life. I'm more in control of my appearance and emotions, and God's provided me with a unique ministry to others who are also victims of autoimmune disease.

Through this trial, I've learned having a chronic illness is not a death sentence. There are times when I feel healthy and energetic and have helped my husband paint the house, clean out the garage, and rearrange the furniture. I try to nap every afternoon, and three or four days per month I find I must have total rest. My family's supported me by reading and studying as much as I have to better understand my condition.

My son's married and moved away, but both he and his wife pray for me regularly and call twice a month to check on my progress. My daughter is in graduate school in New York preparing to become a teacher. When she discovered I have lupus, she wanted to know if she was in danger of developing it some day. I've told her the truth: There does seem to be a genetic predisposition for a woman whose mother had lupus, but it's not the scourge it once was thought to be. With proper nutrition and exercise, her chances for a long, healthy life are excellent.

The most important lesson I've learned through my experience is that this disease isn't God's punishment for my past sins. In Jesus Christ, all my sins have been forgiven. Lupus is a side effect of living in a fallen world; my responsibility is to use my circumstances to glorify God. And I know he's given me a ministry to others who are similarly afflicted.

RACHEL PATRICK GRAVES is a freelance writer who lives with her family in Florida.

1998 by the author or Christianity Today/Today's Christian Woman magazine. For reprint information call 630-260-6200 or e-mail tcwedit@todayschristianwoman.net.

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