What It Felt Like To Walk Away From My Job
As an adult, I have always worked full-time in some capacity. Whether I’ve had two jobs or a 9-5, I’ve always worked hard. I like accomplishments. I like being creative. I like challenges and projects. In college or grad school, I'd pull all-nighters all the time, force myself to get A's, and compete for titles and wins. I truly enjoy pushing myself and being productive.
This is why it was so damn hard to see my energy and ability to go-go-go slowly fading over time — and why it was so hard to walk away from a job that I loved parts of, paid me well, and offered great health insurance coverage. It was as if I died in front of myself, and a new self emerged.
The 9 to 5 grind wore me down
A few years ago I was working at a major wellness company in their corporate editorial department. I took the job despite it being far from perfect because the team was brilliant, the content inspired me, and it was financially tempting. The job was very high stress, even though I'm sure being sick made it seem worse than it was. Not everyone has the same capacity for a 9-5 grind — especially spoonies — and this job really showed me that, in full color. I was also commuting three or more hours a day and sitting on a bus back-and-forth. I often got home too late to see my doctor or get into a workout class.
Looking back, I realized that I was going through one of the sickest periods of my life while fighting for my employer to understand my need for accessibility and flexibility. I felt like I had to beg for them to believe I was sick (apparently being able to walk means you are 100 percent healthy and "normal"), and thank them profusely when they did let me work from home for one day a week. It all felt very demeaning.
Chronic pain and chronic fatigue (with too little sleep) led to debilitating brain fog that made it nearly impossible for me to remember all of my tasks. Sitting at my desk was like injecting fire directly into my spine and hips. I got a standing desk, but being stuck at work for 11-12 hours per day did me no favors.
Still, the thought of voluntarily leaving my job, my salary, and my insurance was simply frightening — especially living in NYC and paying NYC prices.
My AS symptoms were out of control
Unfortunately, ankylosing spondylitis took over my body during my time with this job. It makes me sad to think that I wasn’t the best employee I could’ve been, but I really gave it my all. I felt like an empty, broken void. A shell of my former go-getter, work-loving, over-accomplished self.
I went to bed early every single night and I constantly flaked on friends. I was inside the eye of the storm, so I had very little awareness of what it actually all meant to be working full time and to be literally begging for reprieve from pain and exhaustion. So I decided to quit.
And after I quit, I carried the guilt of not being an excellent employee with me, like a scarlet letter, like a badge of regret. I wondered if I would’ve been a better employee if I would’ve been able to rest more if I could have slept when I needed to, if my back hadn’t hurt from stooping on buses. All of it.
Self-worth sometimes means walking away
But I realize that I was just using accomplishments and work and salaries to tether myself to a sense of self-worth — and that real self-worth is found in loving yourself enough to walk away from things that aren't good for you.
Today, I have given myself self-compassion and self-forgiveness because being sick is unlike anything else. You only have so much control over what your body is doing to you, even if you are medicated.
Looking back, I find it funny that I was working for a wellness company, where getting the opportunity to work one day a week from home was like getting blood from a stone. Today, I see a world that seems perfectly capable of working from home. I wish all sick employees could have been given the same flexibility and trust from the start.
I now work from home, and it's so much easier on me
Nowadays, I work full-time from home. My mental clarity has improved 1000-fold. I sleep when I need to and I stretch when I need to and I eat what I need to. There were sacrifices along the way, like my employee-subsidized insurance, and like the guarantee of a paycheck every two weeks.
But the privilege and the opportunity of working from home has also saved my body. I know people think that working from home means wandering around in your nightgown and taking naps with your cat and avoiding work, but the reality is, I work just as hard.
I know that there are some people with chronic illnesses who don’t work, who are supported by their parents, or who are supported by the government. I know some people with chronic illness put in hard work and physical labor and work day jobs. There are so many iterations of what it looks like to live with chronic illness and I have compassion for each person’s story and pain. I just wish mine wasn’t so studded with feelings of shame and failure. The reality is, I survived a job. I didn’t fail it.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?