When Working Full-Time With Chronic Illness Leaves Me 'Chronically Choosing'

I sometimes look back on life before lupus and psoriatic arthritis and feel startled by the richness of my days back then. I woke up, exercised, taught a full day as a preschool teacher, studied, and often went out for a drink or coffee with a friend before winding down for the night. My schedule required fewer choices than it does now. I thought nothing of how that kind of fulfillment from everyday activities merited keeping — or what the cost would be to my mental health were I to lose any major life activity.

As my lupus developed along with psoriatic arthritis, working full days grew difficult, and working full weeks was impossible. Exercise turned from a joy into a challenge. My friendships transformed from meetups to texts. My thinking transformed from always sharp to often cloudy. I could no longer keep up with the life I had been living.

I realized there was a choice before me. What pieces of my life did I want to keep, and what would I have to let go? Working brings me meaning, direction, and a sense of growth and self sufficiency that I refuse to lose. I’m so grateful that my body still allows me the option to work, even though working comes with many caveats. Teaching no longer fit with my body, so I found a job in social work with a more flexible schedule. I now work with an organization that supports individuals with disabilities who want to work and sets them up with employment positions. I’m setting people with disabilities up for success — a mission that resonates with me.

When I work, I look capable. I handle my caseload well. I complete my administrative tasks thoroughly and on time. I work well with the individuals and families I advocate for. I love my job, supervisors, and coworkers. However, when I work, I hide the extent of the pain and fatigue I am working through.

I hide my pain because I constantly hear the advice “Take care of yourself first; then take care of others,” but saying this to many chronically ill individuals asks them to never support other individuals. Wellness for people with chronic illness often means coping in the best way we can with the choices we make, which we may work to choose and thrive at. Living with our choices while knowing our limits may come close to taking care of ourselves at work, but it may be the best we can do.

When I get home from work, I clean very little. The disarray of my room, my apartment, and the dishes in my sink causes me distress. My supportive roommate gets frustrated but tries to understand me and exercise patience.

I also know I have to do many other things cautiously because of my health. Just one day of exercise could cost me days of work. I inject weekly medications on Fridays because I know I will lose the next two days to vomiting and nausea and cannot lose any work days. Still, though, without taking any vacation, I plow through sick days and “vacation days” I spend sick. The guilt I face when taking time off because of chronic illness becomes chronic too.

My job is my life. My job became my life not because I focus too hard on work but instead because physical limitations, pain, fatigue, appointments, and medications take up the rest of my time. I love my job, and when I do not work, I fall into grief. When I need to take time off and use my vacation days or the FMLA, I often fall into depression.

My friends and family never left me, and my support network stands by me. But my life isn’t perfect because I still have to choose, and I know I need my work. Just barely putting in all the time I need to work becomes more than a full-time life. Choosing to work with a chronic illness — or choosing anything with a chronic illness — often also means choosing what to exclude from life. These personal choices may come at a cost — like cooking, reading, or even family bonds and friendships. For each choice, excluding the other options often relieves no stress but may only come from necessity. We may give our all to these choices we focus on, and some of us may never feel like we can give enough. My choice was my work, but I still struggle with how “full-time” my chronic illness is too.