When I was a kid, I loved a good sick day. Of course I didn’t like being sick. But there’s a sweet spot where you’re just sick enough to stay home from school, but not too sick to watch daytime TV in your pajamas. That’s when it was really fun.
Or so I thought.
When I was twenty six, I developed Chronic Fatigue Syndrome. I started having bouts of fatigue and muscle weakness that would last for days or weeks on end. Gradually I developed more symptoms: swollen throat, burning ears, stomach pain, brain fog, dizziness, and more. I always felt like I was one day away from the flu. Not really “sick” sick, but definitely unable to function.
I was perpetually in the sick-day sweet spot. But it quickly lost its sweetness.
Although my boss was kind and flexible, I struggled to keep up with my work. At the time, my husband and I were job sharing, so he filled in as much as he could for me. But we also shared the role of caretaker for our eight-month-old son, and I didn’t have the energy to keep up with an active toddler. On top of everything, we were living thousands of miles away from our support network of family and friends.
We knew something needed to change. After a year and a half of limping along at work, we finally decided to call it quits. My mom graciously offered her home to us, so we moved back to Illinois. We hoped that a six-month sabbatical would improve my health.
Six months later, I was worse. We relabeled my sabbatical: indefinite.
It’s now been a year and a half since I had a job.
Although I’ve finally found a treatment that’s working, my health is still too inconsistent for a normal job. Sometimes I feel good for weeks on end. Other times I’m lucky to leave the house once a week. I still have symptom flare ups, and a weak immune system ensures that I catch everything. Though I’m gradually recovering, I doubt any employer would want to work around my body’s current schedule.
I still hope that I’ll be able to work again one day. Some days I peruse job listings and dream about stocking shelves and answering phones. Grunt work sounds marvelously exciting to me. Because although I may have enjoyed occasional days of rest, I have most certainly NOT enjoyed being too sick to work. Here’s why:
Being too sick to work is mind-numbingly boring.
Binging Netflix is fun, right? Now imagine doing only that for a month straight. Not leaving your bed. Not seeing anyone. Maybe not even showering much because you’re too tired to hold up your body. You eat the same bland foods every day, because your stomach won’t tolerate your old favorites. And every day is pretty much the same.
Being sick has been so boring for me. I miss having somewhere to go every day, and purposeful work to do. I miss having a schedule and being able to look forward to things. You never realize how much you like working—and I already did—until you lose your ability to do it.
Being too sick to work is depressing.
Depression is incredibly common among people who are chronically ill. I especially struggled with how isolating it is. Even though lots of people wanted to spend time with me, I didn’t have the energy to see them. So I was often alone for days on end.
On top of that, I couldn’t do most of the things I used to enjoy. For a few years, I struggled even to read books, because my brain fog was so bad. I had so few choices every day that it sometimes felt like I didn’t have any at all. I started feeling less like a human and more like a body in a bed.
At the height of my illness, I sometimes wondered if it would even matter if I died. Thankfully, my son kept me from entertaining this thought too long. I promised myself that I wouldn’t give up so that he would have a mom.
You feel guilty all the time.
Pre-sickness, I served in overseas missions, and I loved knowing that my work mattered. When I quit my job, I felt aimless and worse—useless. I could no longer contribute to society. Instead, I was becoming a burden to my family and friends.
This guilt was especially strong towards my husband. When I got sick, he took on 99% of the childcare, housework, and financial provision for our family. Meanwhile, I sat in front of a TV and ate breakfast in bed. Although my husband never said a resentful word, I knew that our roles were beyond unfair.
To make matters worse, a lot of people didn’t seem to understand how sick I was. When I explained my daily life, they laughed at how “spoiled” I was. Although I knew I needed rest and care, their words made me feel even more guilty for receiving it.
You don’t know who you are anymore.
When I got sick, I went from being a world-traveling missionary to a full-time patient who rarely left her room. Everything I’d hung my hat on was suddenly gone. I didn’t want to think of myself as a “sick person,” but I honestly didn’t know what else was left.
I went through a big crisis of identity and faith, trying to figure out what was still true. If I couldn’t do anything, was I still me? Was I still useful or at least valuable? I realized that I’d spent a lot of my life trying to earn my worth. My identity was synonymous with what I could accomplish. That had to change once I got sick, and it was an extremely painful process.
But you also find out what really matters.
The one good thing about being too sick to work is that it forces you to reevaluate your life. My “aha” moment happened when I realized that all the bootstrap-pulling in the world wasn’t going to save me. Chronic illness couldn’t be “pushed through.” I had to find another way to deal with it.
Up until that point, my whole value system had centered on being a hard-working, able-bodied person. Now, I treasure less circumstantial qualities like empathy, wisdom, vulnerability, and inner strength.
Being outside the fast-paced work world has also helped me see how fleeting and fragile our accomplishments are. What lasts longer is the impact we make on other people. As Maya Angelou would say, “People will forget what you did, but people will never forget how you made them feel.” So I savor all the time I can get with my family and friends, and I try to be more thoughtful about my words and actions towards them.
Although I may not ever have a proper job again, I now know that I can live a purposeful life without one.
Paid work would simply be the cherry on top.
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