Some days it’s hard to get out of bed. Other days I fall into bed at 8 p.m. and sleep until the alarm goes off. Fatigue is a constant reminder. Some days my left leg is tingly or the left side of my face is numb. Other days a rash appears below my knees and turns my feet red with spots. Sometimes I just ache with joint pain. These all are reminders that I have an autoimmune disease called Sjögren’s Syndrome (pronounced show-grins). Probably one of the most challenging things about having this autoimmune illness is that I don’t look sick. In fact, if you look at me, you have no idea that I fight debilitating fatigue or that numbness is a constant nuisance. I persevere daily with a smile on my face, looking great and often feeling lousy.
It took four years to get a diagnosis. I would not have made it through that very difficult season had I not known the comfort of a loving God. God’s presence was evident in the members of my Bible study who prayed for me and in the comforting passages I read from the Bible. That’s why when I saw the fatigue and the rashes manifested in my daughter Anna I knew one thing: she needed to know that God was with her.
I have found that seeing God in the midst of pain and suffering takes tremendous effort and focus. I have to look away from my personal struggle, away from all the frustrations and find the bright spots, the times of love and comfort that peak through into my darkness. In the dark days before diagnosis this was especially difficult to do. Life was happening all around me, and I couldn’t participate. I didn’t know what was wrong with me (and neither did the doctors), and I had no assurance that I was ever going to be well again. What helped me persevere was the assurance that God loved me, and I held fast to this conviction through those very difficult four years before I was diagnosed.
Remembering this, I took my experience and tried to coach Anna as she faced a similar season in her young life. We found encouraging verses from the Bible like, “I can do all things through Christ who strengthens me” (Philippians 4:13) and “We know that in all things God works for the good of those who love Him” (Romans 8:28). We found inspiration in the warm notes from people who were praying for her. We smiled at the “coincidences”: sitting in a committee meeting with people who could connect us to doctors at Johns Hopkins, selecting specialists from lists of options and somehow finding those who were Christians and meeting a young lady—the very same age as Anna—at a Sjögren’s Patient Conference who just happened to be the granddaughter of Anna’s sub-school administrative assistant. God was breaking in. Each time God broke in we smiled, and each time Anna knew once again that God dearly loves her.
Anna still doesn’t have a definitive diagnosis, but she is responding well to the very same medication that I take. We suspect that one day, sometime in the near future, she too will be officially diagnosed with Sjögren’s. It has been a difficult season, but God has “worked for good.” “How?” you might ask. Well, we both have a far more intimate relationship with the living God than we would have had we never had to persevere in pain. This relationship will sustain us both as we live with chronic illness. “For the Lord our God goes with us, He will never leave us or forsake us” (Deuteronomy 31:6).