Living with a Chronic Illness

I’m currently writing from the balcony of my new home in Buckhead, Atlanta. The sun is shining; the birds are chirping. Wind blows delicately through the forest of trees nearby. Lauren Daigle’s rendition of “How Great Thou Art” plays in the background. Autumn leaves sail through the air like snowfall. To my left: a cup of coffee in a Christmas mug. To my right: a journal and daily devotional. It’s a beautiful Sunday in October. 

While most would enjoy the feeling of sunshine washing over their body, all I could write was that first paragraph before my feet began to swell and experience a painful, burning itch all over. Mental pothers of panic disrupt the peace of my perfect balcony moment. I migrate to my living room before the allergic reaction worsens. 

This is what it’s like to live with Solar Urticaria- a rare, chronic disease I developed in my final year at the University of Georgia. It’s defined by severe sensitivity to sunlight that cannot be prevented with sunscreen. In addition to a painful, intensely itchy “breakout,” I experience dizziness, rapid heart rate, fatigue, short-term confusion/forgetfulness, emotional distress, severe anxiety, depression, and sometimes fever. All after a few minutes of sun exposure. The disease is debilitating and heartbreaking. By United States government classification, I’m disabled. 

I consider myself lucky. Many with my same condition have it a million times worse. Some break out under clothes lacking UV shielding and experience fever that lasts for days after a reaction. Others are unable to “skin harden” without risking deadly anaphylactic shock. “Skin hardening” (the actual term) is a therapeutic method during which you expose the skin to sunlight and take the pain/severe itching until your skin adapts after a few weeks. My arms and legs are, for the most part, “hardened.” My entire body can typically harden if I spend enough time in the sun and inhale Benadryl like oxygen. The process is (no exaggeration) pure torture. It’s constant work. Otherwise, your skin goes back to full sensitivity and the process starts from the beginning. 

At first I was in complete denial and kept the severity of my reactions a secret. Telling people about my disease only made me feel like a weak, attention-seeking complainer. When I joined a Solar Urticaria support group on Facebook and realized just how bad others had it, I gravely understood the importance of spreading awareness. 

 Conversations about chronic disease in general are immensely important for the millions of people who suffer in silence. They (we) need to be fully comfortable talking about their condition with their peers without the associated guilt and shame that often stems from feeling like a burden. According to a study in Britain called “The Truth About Suicide,” 1 in 10 suicides are directly linked to chronic illness. This number is devastating. 

 Although it’s a challenging condition to live with, I refuse to let myself become a victim. Every morning when I wake up, the disease presents two options. I could choose to live in constant fear and never leave my bedroom. Instead, I stubbornly summon the audacity to fight the sun... the most powerful source of energy in the universe... Usually it wins, but I’ll never stop fighting. Though Solar Urticaria is tough, fear is a common disability even more threatening. I refuse to let either steer my life.