Making the Decision to Stop Working When You're Struggling With Chronic Illness
It would be so simple.
All I would have to do is hurt myself. Hurt myself in such a way that I couldn’t go to work. I could crash my car into a sign or –
Wait. Was I really contemplating physically injuring myself, just so I didn’t have to go to work?
My job as a customer service rep for an insurance company was great. I had wonderfully supportive coworkers. The company I worked for treated their employees well. I worked a steady schedule with benefits, paid holidays and weekends off. We had a gym with free yoga classes. They had just held a carnival to raise money for the local United Way. As jobs go, it was pretty amazing.
How had it all come to this?
Extreme fatigue and constant pain had steadily broken me down until I became a person I no longer recognized.
In 2008, I was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP). It had taken years of testing to reach this point. Even though I received the diagnosis the day before my 10-year wedding anniversary, I actually considered it a gift instead of letting it overshadow my marriage milestone. I finally knew what was wrong with me and it could be fixed.
Except it couldn’t.
Then came the allergies. So many allergies to so many medications that could have improved my life immeasurably. Pain medications, even IVIg, the most commonly prescribed treatment for CIDP, was out of my reach.
I was able to get by for years. My endurance was shot. The pain was getting worse. But I could manage. I concentrated on raising my kids and doing odd jobs when my family needed extra money. It wasn’t much, but it was enough.
Then came the day I was hired by the insurance company. My family had moved to a more expensive location with better schools. My children were teens and no longer needed me to watch them when they got home in the afternoons. It made perfect sense for me to get a full-time job outside of the home.
I loved my job. I aced training and was one of the best customer service reps in the call center. Helping people with their policies, especially the elderly, was so intensely satisfying for me.
For the first time in a long time, I had an identity outside of my family. I wasn’t just a mom or a wife. To the scared person on the other end of the line who wondered whether their mother’s move to a nursing home would be covered, I was their lifeline. I gave them hope.
I loved that.
But then the fatigue set in.
It was minor, at first. I needed to rest after a full day at work. I could usually recharge my energy enough simply by going to bed early after spending an evening curled up on the couch, watching TV.
Before I knew it, it had progressed from needing a single nap on my days off to taking two, even three. I was falling asleep on the couch after I got home every evening instead of just watching TV. I was too tired to do anything, too tired to even breathe it seemed.
And then there was the pain.
When you live with several pain-inducing conditions and an allergy to every over-the-counter pain medication known to man, you get used to living with pain. But this was different. It was relentless. It was sharp and dull, all at the same time. It was bone-deep, shooting up my arms and legs. Every morning, every inch of me was stiff. My lower back was sheer agony. I was getting constant migraines. Even the simple act of walking became a Herculean task.
I might have had evenings, weekends and even holidays off, but you never would have known it. I didn’t leave the house. No matter how much I wanted to, I couldn’t. I was so exhausted, I couldn’t even enjoy time at home with my family. My world had become nothing but work and sleep and pain.
I was living in hell. Deep depression set in. I found myself fantasizing ways in which I could get out of working, at least for a little while. That’s when I knew, I had to quit.
My family deserved better. I deserved better. No job, however satisfying, was worth this.
Quitting has been hard on my family financially but I’ve found ways to try to make ends meet. I caption videos and do transcription work, both of which I find intensely fascinating and gratifying in their own ways.
I’ve also gotten back into my writing. It was a childhood dream of mine to be an author. Now I’m able to pursue that dream wholeheartedly.
I still get tired and I’m still in pain. That will likely never change. But I’m happy. I’m a mom, a wife and a writer. That’s more than enough for me.
Follow this journey on the author’s website.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via Mladen_Kostic.