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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via goodynewshoes.


Find this story helpful? Share it with someone you care about.


Related to Rheumatoid Arthritis

people working out at the gym

Why Living in a 'More Exercise Is Better' Culture Is Hard for Someone With Chronic Illness

Exercise. For some people it’s a dirty word, for others it’s a struggle that offers rewards, and yet for others it’s what keeps them going every day. Its benefits are numerous: studies show it can help mood, sleep and weight control and it can help manage or prevent type 2 diabetes, heart disease and many other illnesses from [...]

To the Passengers on Flight 2110, From the Woman Wearing a Face Mask

Dear passengers of Flight 2110, You saw me and I saw you, too. We were traveling from San Antonio to Los Angeles and it was a late afternoon. Remember? I was with my mom and she was trying to help me with my carry-on, but I was arguing with her that I could carry it. [...]
pad of paper next to a passport and mini globe

Why I Made a Chronic Illness Bucket List

Fly on the Hello Kitty plane, drink Starbucks at Epcot, Disney World, eat my first lobster in Maine, attend a Harajuku fashion walk in Tokyo, see the Peabody Hotel duck march, drive a Tesla, meet Matt Iseman and tell him thank you for making rheumatoid arthritis less scary when I was diagnosed… these are just [...]
watercolor painting of a woman with black hair and her eyes closed

What I Wish Others Knew About Chronic Illness Before Telling Me I 'Should Exercise More'

I have Hashimoto’s disease, which is autoimmune hypothyroidism. Over the past few years, my symptoms have been getting increasingly worse and I’m now waiting to hear back from a rheumatologist confirming that part of why things have been getting worse is because I have either rheumatoid arthritis, or a combination of rheumatoid arthritis and fibromyalgia [...]