The Truth About Living with an Invisible Illness
I forced myself to go church because I knew it’d be good for me, for my soul. But now I can’t stop fidgeting from the pain. Why aren’t these pews padded? My husband gently rubs my neck as I roll out my stiff ankles. My shuffling around is distracting the people sitting behind me.
I hadn’t left the house all weekend—too tired, too dizzy, too uncomfortable to do much at all. But I know my body needs God and his body. I want to be in his house to feel his presence in my pain.
This is just one scene from my invisible fight with the degenerative condition that rages in my body every day. When others see me, as my neurologist recently described, they see “a completely normal 27-year-old woman.” Every other person I run into at church tells me how cute I look; really, I often dress up to cope with how bad I feel inside. I guess it might be working.
While I look and act much like others my age, an autoimmune disease shapes nearly every aspect of my life. I “got sick” seven years ago as a junior at Covenant College. In a matter of days I went from regularly running and rock climbing to barely being able to walk, hold a pencil, or get out of bed. Ankylosing Spondylitis is arthritis that runs down the vertebrae of my spine, resulting in joint pain and inflammation throughout my body. Since being diagnosed, I have never experienced a day without physical pain.
Illnesses like mine, though severe and life-altering, can go overlooked by the people around us. At times, the pain is enough to render me disabled, homebound, or severely limited in movement, but my outward appearance looks mostly the same. Besides the extra weight from being on long-term steroids, I resemble the woman I was prior to sickness. I don’t have a bald head or a wheelchair to tell you I’m sick.
Statistically speaking, there are many fidgeting-in-church, invisibly sick people like me. In America, 50 million people suffer from autoimmune diseases and 75 percent are women. As of 2012, half of all Americans had one or more chronic health conditions. Arthritis, which includes ankylosing spondylitis and rheumatoid arthritis, is the leading cause of disability in the United States. Chances are you know a handful of other people with autoimmune diseases, and you might not even realize because, as researchers note, the “core symptoms of rheumatic diseases—pain, stiffness, and fatigue—are mostly invisible” and ongoing.
By accommodating disease symptoms, we can sometimes displace the soul’s deep need for community. We’re stuck choosing between time with friends and loved ones and our body’s need for rest. Pain and fatigue keep me staying home even when I’d rather socialize. The best friends, in these circumstances, get that you’re in gnawing pain and want to come see you anyway.
But mostly, it’s lonely. A lifestyle study of people with joint inflammation described loneliness as “the distressing feeling that accompanies the perception that one’s social needs are not being met by the quantity or especially the quality of one’s social relationships.” How can my husband, family, and friends meet my needs when my symptoms are “unpredictable, unexplainable, and unresolving”? When do you send flowers or bring a casserole to someone who’s going to be sick her whole life? This dilemma brings another burden to the chronically ill: We are the ones responsible for communicating our pain, exhausting as it may be. We can’t get our physical and emotional needs met if we fail to make them visible to others.
Invisible illness has been the crucible of God’s love in my life. This trial has forced me to see him anew. While my pain isolates me, it also connects me to God and others. God in Christ intimately knows physical pain as well as the agony of being misunderstood and invalidated by those closest to him. Only God and I can really understand the depth and gravity of my physical affliction and the soul-grief it causes.
In the quiet space of suffering, God has shown me his love. The exhaustion of making my invisible illness visible is transformed as I draw near to the God who knows suffering. The Holy Spirit empowers me to communicate my suffering to the world. God’s presence in pain pushes me to share my experience with loved ones in a way that drives away isolation.
The greatest joy in my life is by Christ’s resurrection my pain, invalidation, and grief are being redeemed. Despite a diagnosis that spans the rest of my life, the hope of the gospel is my pain matters to God and will end. My illness may be invisible, but I am not invisible to God.
Katie Jo Ramsey is a joy-seeker, recovering idealist, counseling graduate student, and autoimmune patient. She writes regularly for The Huffington Post and The Mighty and blogs at Anchor for the Soul.