A New Leaf with Lauren: Working (and Not Working) while Chronically Ill

I’m Lauren, a community member and new contributor to the Chronic Warrior Collective. I’m a curious, introverted, empathetic thirty something living alone in the San Francisco Bay Area. In 2023, I was diagnosed with fibromyalgia, and my life has never been the same. Now that I’m a few years along in my chronic illness journey, I’m eager to share my experience and build community with others facing the same limitations. I didn’t expect my life to turn out this way, but I’m looking for opportunity and joy as I turn this new leaf.

How did I get here?

I’ve always been a high achiever, holding myself to impossible standards. I had absorbed the American mindset of constant productivity and professional improvement. As an undergrad at UC Berkeley (go Bears!), I spent late nights in the library to maintain high grades, often staying until the library closed. I majored in political science, and after graduating, I started working in progressive politics, campaigns, and elections. The work was intense, overwhelming, and seemed to be in a constant state of urgency. I loved the adrenaline and camaraderie it created, but I could see my body breaking down under the pressure. One election cycle, I was watching the returns roll in on election night when I felt a twinge between my shoulder blades; within a week, I was immobilized in bed with a muscle spasm, an issue that continued to plague me for years until I got my fibro diagnosis.

I wanted to make a career change that wouldn’t put quite so much stress on my body, so I chose to pursue an MBA. Why did I think an MBA program would be less stressful than a campaign? Who can say. I began my program at UCLA in August 2019, so the program was in person for 9 months before COVID quarantine began. Once we moved indoors with the rest of the world, it seemed like no one was feeling that well. I chalked my escalating symptoms up to lack of social engagement and COVID anxieties, not seeing the underlying gut infection that was growing. I completed my program and moved on to a new career in tech. I knew I still didn’t feel well, but I had yet to begin connecting the dots.

My official journey with chronic illness began in 2021, when persistent hand pain finally pushed me to start looking for answers. It started with hand pain and soreness, but I was also having pain in my feet, my ankles, my wrists and forearms, my jaw, my head, my face, my neck, my shoulders and upper back, my knees, my hips…not to mention the fatigue, nausea, the list went on and on. After years of being shuffled between providers, given tests but no diagnosis, and fruitlessly attempting to track my growing list of symptoms, I finally received a diagnosis of fibromyalgia and was able to go on medical leave from my tech job. I didn’t realize it at the time, but my diagnosis marked the end of my working life as I knew it. I’ve been learning how to work (and not work) with my new disability.

When my medical leave lasted too long and I didn’t get better in time, I lost my tech job (and the physical and health benefits it provided). I attempted to return to elections, but the stress of the work triggered a crash not half a year later, and I had to fully accept that life is behind me. 

Building a Disability-Friendly Career

Despite doing so many things in my young adult life to make myself employable, I was no longer sure I could even do the jobs once hired. My career hit an interruption, and I didn’t know how to get it back on track. After my most recent work-triggered crash, I hit a low point mentally. Is there anything I could do for work going forward, or should I just give up on my career for now and focus on fighting for SSDI?

The truth is, I still don’t know the answer to that question, but I’ve made the decision to keep driving toward a career that can exist sustainably alongside my health issues - namely, I’m exploring a new path in mental health. From the darkest depths of my illness experience, the greatest leaps I’ve made toward feeling well have come via mental health support, and I hope to be able to act as that support to others like me (and us in the Chronic Warrior community) in the future.

I’ll be sharing more about my journey: the fears and anxieties of seeking employment as a disabled person, the decision fatigue that can arise when you rebuild a life that imploded, and the excitement of a new chapter that allows for rest and recovery alongside meaningful work. But it doesn’t all have to be about work! I’ll share some of my moments of joy along the way.

Lauren