Going About Life With Chronic Illness: An Oscar-Worthy Performance

Someone recently told me to “write the thing you are most afraid to write.” Well, here it is! I recently wrote about the secret society of chronic illness, but inside the walls of that secret society, there is also a secret world of struggle. For most chronic illness warriors, our illness is invisible, and in the same way our struggle is hidden from plain sight too. The struggle we face daily is both physical and mental. To the healthy world we appear to have it together, but meanwhile we secretly know it is only held together by a Band-Aid (and not a cute character Band-Aid but an ugly, boring one). We wonder – or should I say worry – daily how long we can keep up the façade.

The daily invisible struggle is truly exhausting since it is a full-time job – one that a patient can’t escape. Chronic illness is like a toddler: it is unpredictable and you can’t turn your head for a second because it demands being the center of attention. But unlike a parent of a toddler, a chronic illness patient never gets a break from their illness and there is no babysitter for a night off. Oh, how I wish I could drop off my rheumatoid arthritis for a night and enjoy dinner and a movie out while I pay someone else to feed it, bathe it and put it to bed. I would pay top dollar for that if I could. But chronic illness is much more like a conjoined twin, always there with its own opinion.

The bags under my eyes as I drag myself to work are not from partying or going to a late night movie. They are warrior wounds. Those bags tell a tale of painsomnia. I spend most nights up in pain, debating whether I should wake my husband or tough it out to see if the pain passes. And, after spending hours debating whether the pain I feel is just “normal pain” or something new, I finally fall asleep. But sleep is only about four to five hours because the alarm clock rudely wakes me up and then I have to paint over my nightly battle wounds to present myself to the healthy world.

Most of us patients should win an Oscar for our daily performance. I personally struggle to look like I have my life together. While I put all my effort into my job performance, it seems my housework suffers. And I know I am not alone in this struggle because I know my fellow warriors deal with the same shortcomings. Most of us only have energy for one “extra” thing a week and for most of us that one “extra” thing is usually medically related: an appointment, blood work, a trip to the pharmacy, a procedure or a test. And no one sees our emotional struggle when we have to adjust our schedules to fit our medical life into our so-called real life. My personal struggle has been trying to fit in infusions or injections and planning my medication for the weekends so I can work through the side effects while hiding from the healthy world.

But I have found that this life of secret struggle has given me a true support system. There are genuine souls who want a truthful answer when they ask how I am. Those friends are only truly revealed when illness hits. My secret struggle also leads me to be more spontaneous than I was before RA. I am learning to appreciate every hour because life can change from hour to hour. Why wait until a Friday night for a dinner date? If I feel good on a Wednesday night, I will put my lipstick on and plan for an impromptu mid-week date with my husband. But mostly, I have found how truly brave I am. I sometimes wonder how it all hasn’t fallen apart yet, but then I realize it is held together by belief in myself.

So to those of you who know this secret life and are familiar with the struggle of being a part of “normal” society (whatever that is), I encourage you to start preparing your Oscar speech now because you each deserve an award for the way you are handling your struggle. And personally, I would like to thank each of you because without you, my secret world would be lonely.

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Thinkstock photo via goodynewshoes.