Lupus In America Data Reveal Struggles with Work

Working with a chronic condition is difficult. That is an understatement. For some people living with lupus, it is impossible. Our 2nd Lupus In America survey gave us a snapshot of how lupus can interfere with someone's career.

Our survey included responses from 836 people living with lupus, including 592 people who are older than age 50.

We asked the Facebook community, "How has lupus affected everyone’s ability to work?"

Lupus does not allow me to work

"I had to pretty much give up trying because I have such a wide range of unpredictable symptoms. I’ve lost multiple jobs because I can be fine for months then wake up 1 day unable to walk for the next week."

"The complications of lupus are so unpredictable day-to-day that it's very difficult to function. My doctor unexpectedly told me that I was done working. Had to leave my job of 25 years that I loved. I miss it so much. It is devastating to experience such changes and be so ill."

"Can't work, barely able to care for myself. I miss feeling needed, productive, artistic, and the gratification of solving problems. I miss the money that allowed me to thrive."

"I was a nurse in the OR. Had to quit, could not work as an RN. Went to school for years to get my education. Worked for 40 years."

Going on disability

"I had to go on disability, and I had a job I loved to do. So ya, it's debilitating."

"I’ve been on disability for 8 years now because I am unable to work. My career as a 911 dispatcher had to come to an end."

"I've been on disability unable to work for about 3 years now."

I am still working with lupus

"After I got off of all my meds and went to a holistic approach I started my own business and have been that for nearly 5 years. I was diagnosed with cancer last year but I am powering through that. I filed for disability about 2 years after my initial diagnosis but was denied because I was only 39/40. I am now 46 and doing well!"

"I went from a full-time PACU nurse to working part-time. And barely making it to a whole 8-hour shift is embarrassing and hard."

"I was unable to work for a very long time. Went back to school for my master's and got licensed and am now a licensed independent clinical social worker. I feel very lucky that I am doing a job I love! Some days are harder than others but I have been doing pretty good for a few years now and even able to cut down on my
steroids."

Lupus and working

Thank you for being vulnerable and sharing the unpredictable experiences of working with lupus. We know it is a topic near and dear to your hearts. We hope you find a sense of community here at Lupus.net among others who truly get it.

The Lupus In America 2021 Survey was conducted online from February through March of 2021. Of the 836 people who completed the survey, 592 were 50 or older, 95 percent were women, and 5 percent were men.