Beyond the 9-to-5: Lupus, Work, & Finding Your Path

One of the scariest parts of getting sick with lupus was realizing I’d never be able to work a full-time job. Many lupus patients are able to work full-time. However, my daily symptoms are severe enough that trying to work a traditional 9-to-5 job would quickly send me into a serious flare.

For years, I grieved the loss of the career I’d always imagined I’d have. At one of my first support group meetings, I asked nearly every other lupus patient in the room what they did for work. But what I was really asking was this: "How do you support yourself in a capitalist society built for the healthy and able-bodied when you’re barely able to get out of bed in the morning, let alone work full-time?"

Many lupus patients, like me, have found non-traditional ways to make money. Some of us work as patient advocates, content creators, or in the gig economy. Meredith Sklarewitz is an autoimmune warrior who has also faced challenges at work due to her lupus. She was able to use her PhD in Exercise and Nutrition Science to to develop a wellness app for people with autoimmune diseases. Her app, Our Serendipity, is comprised of daily positive affirmations, meditations and gentle exercise routines, as well as healthy recipes. Meredith sat down with me to talk about lupus, working a non-traditional job, mindfulness, and what wellness means within the context of chronic illness.

"When did you first become sick?"

I was diagnosed in 2003 with Crohn’s. My mother had passed away from MS in 1996. After that, I started having problems, but I thought it was just stress. A few symptoms would pop up over the years, but I’d always chalked it up to Crohn’s. Then in 2010, I was diagnosed with drug-induced lupus. I was experiencing a lot of joint pain and a lot of fatigue. I felt like I couldn’t even remember my own name. Then I started having heart pain. My actual diagnosis of lupus came in 2021.

"What are some challenges you’ve experienced that make working a traditional 9-5 job difficult?"

I am able to work a salaried job, but I’m lucky that the hours aren’t strict. During quarantine, I noticed that my quality of life actually increased because I was able to work from home. Rather than being stuck all day sitting at a desk, I could sit on the couch with my feet up so that my hips won’t hurt. I could take a ten minute bath to soothe aching joints. I was so much more productive!

"Why did you decide to develop an app?"

For the longest time, I’ve wanted to make things better for those in the autoimmune space. When I was ten years old, my mom was sick and I wanted to be a neuroscientist so I could cure her. I’d watch my mom meditate, and it wasn’t until later that I realized what a blessing it was. But it took a long time for me to realize that most people don’t have the resources to meditate, enjoy gentle movement, and find a hub of positivity while struggling with an illness. Toxic positivity is real, and simply being positive isn’t going to cure us. Not every day is going to be ok, but if you can do one little thing everyday for yourself, that’s empowering.

Positive thinking isn’t about pretending things aren’t hard. It’s just a tool to help you get through the hard stuff. I ask myself, “How can I reframe this situation in a different way?” For example, at first I was upset at needing a double hip replacement at such a young age. Then I thought about how wonderful it is that this technology exists that can vastly improve the quality of my life.

"What are your personal favorite mindfulness activities?"

Relaxation and sleep meditations are especially important for me. They help me turn off negative thoughts so I can sleep. Having affirmations are important, too. They help break me out of any negative spirals I find myself in. I also remind myself what I’m grateful for. I tell myself, “I’m alive. I’m breathing. There’s some good in this world.”