Coping with the Ugliness of Chronic Illness

Coping with the Ugliness of Chronic Illness

August 25, 2016 | Posted in: Coping, Faith, Lupus

When I look in the mirror I see scars from where doctors cut into my neck for countless heart tests and procedures. I see a stubborn double-chin from prednisone that just won’t go away. I see irritated eyes from fatigue, even though I slept for at least ten hours last night. I see dry skin screaming for moisture because that happens when you have a liver disease. I’m twenty-one years old—I shouldn’t be seeing this as my reflection, but chronic illness has stripped away the image I used to know.

I have Systemic Lupus Erythematosus (SLE), Cryoglobulinemic vasculitis (don’t hurt yourself trying to pronounce it), and Primary Biliary Cirrhosis (PBC)—on top of it all I also have a damaged heart from a massive heart attack. Each of these diseases revealed themselves overnight. Within six weeks my life was completely altered. These diseases cut deep wounds, scarring me physically and emotionally, leaving ugliness on display in my life.

I spent a month in the hospital post-heart attack. During that month I underwent countless health trials including—two heart surgeries, almost dying on the operating table, being kept alive by a machine, almost bleeding to death, and contracting sepsis, pneumonia, and staph infection. I was on multiple pain medications, prednisone, Rituximab (chemo), and was being treated with plasmapheresis. I had ports, tubes, and wires coming out of my neck, arms, hands, and leg. I gained over twenty pounds, despite barely eating anything. I had open, deep sores on my legs. My face was broken out and puffy. When I came home from the hospital I lost a lot of weight (more than I had gained), except in my face—I still had chipmunk cheeks. All of my clothes felt like they were falling off. I had a port in my arm still so that I could receive the remaining chemo and antibiotics. My hair continuously fell out, leaving me with bald spots. Everyone kept commenting on how skinny and great I looked—that’s a compliment, right? Sure, I looked healthier than when I was having my heart attack.  It didn’t feel like a compliment, though; it only reminded me of the many things disease had taken from me.

I avoided mirrors. I avoided pictures being taken of me. I was self-conscious about eating in front of people because they all commented on how little food I ate. (They still do.) I despised having to get dressed in the morning because nothing fit right—clothes falling off from weight loss, shoes too tight from retaining fluid. Doing my hair made me cry because I used to have nice, long, thick hair. Constant reminders of what I didn’t have anymore kept my emotions out of sorts. I was happy and thankful to be alive, yet I was grieving the loss of my old life. Click To Tweet

One day I came across a few Bible verses I had saved on the Bible app on my phone—Isaiah 53:5, Romans 8:18, Corinthians 12:9-10, and James 1:2-3. Isaiah 53:5 showed me that I am not defined by my scars, but rather I am defined by the scars Christ bore for us so that we could have everlasting life. Romans 8:18 gave me hope by reminding me that someday this weak, broken, diseased body of mine will be made whole again. 2 Corinthians 12:9-10 encouraged me to keep fighting because I have strength through Christ Jesus who overcomes weakness. James 1:2-3 showed me that I could persevere in the hardships of a chronically ill life because God granted me a faith that cannot be shaken. I hold these verses close to my heart daily. And on days when it seems impossible to carry on, I turn to God, His word, and my two favorite hymns: Because He Lives and In Christ Alone.

Chronic illness is ugly. Hardship is ugly. But, my dear, fellow chronically ill warriors, Christ is beautiful and makes the ugliness of our lives into a masterpiece. Coping with chronic illness is made easier in the sweet, loving, strengthening embrace of Jesus Christ.


Coping with the Ugliness of Chronic Illness

McKenzie, author at Ceaseless Joy, and her dog.

I am a Jesus loving, chronically-ill child of God. I am an avid learner—of many things, especially cardiology—reader, writer, and student (pre-med). I have Systemic Lupus Erythematosus (SLE), Primary Biliary Cirrhosis (PBC), Cryoglobulinemic Vasculitis and I am a heart attack survivor. Chronic illness has cut many pieces from my life, but it has also chiseled me into the person God wants me to be. Chronic suffering has allowed me to enjoy the beauty and goodness God has gifted us; I delight in the small things of life. When we are faced with trials, physical ailments, and emotional hurt it is often easy for us to allow these hardships to dictate our happiness. However, when we look at Christ and what He has done for us—the love He has shown us—we can find joy in even the darkest of places. Join me in seeing how His unending love for us is our ceaseless joy at .


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