In this final installment of a week-long series on chronic illness and employment, we pick up where we left off: frustrated by her circumstances and her chronic conditions, Leah Roman had a huge choice to make. Just how much was she willing to sacrifice her health? If she asked for what she truly needed, what would that look like? Follow the rest of her story, in her own words. We’d love to hear your thoughts on her big decision.
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From August to October 2012, I dealt with a particularly bad flare-up. As it had in the past, my flare incited my chronic hip bursitis. The bursitis made it almost impossible to get up and down the stairs- a feat required of the two-train commute into my Philadelphia office. There are 48 stairs just to reach the train platform in my suburban town. After trying various strategies to accommodate the commute (e.g., traveling with my husband so he could carry all my stuff; using the SEPTA elevators-which are often hard to find and/or out of service), I always seemed to get the same result:
I always collapsed on the couch exhausted at 6:30pm. I was too tired to make dinner. I was too tired to exercise. I was too tired to make social plans. I avoided plans on weeknights because I was too exhausted from that day’s work. I avoided plans on weekends because I needed that time to recover from one exhausting week before another exhausting week started on Monday.
After much soul searching, I decided to take the advice of a mentor who helped me adjust to a life with chronic illness. She said, “Ask for what you need”. So I did.
I needed a flexible schedule. I needed a commute that was physically do-able, even on the worst day. I needed to reduce my stress level. I needed to feel more independent and get through my day without so much help. I needed to get over my fear of working from home.
My biggest fear was that working from home would be isolating. Having a chronic illness is isolating enough and I often thought that going into the office (even with its challenges) got me moving and socializing when my instinct may have been to hide at home under the covers. I was also lucky enough to have my best friend in Philly work just across the aisle in our workspace. I got through many difficult days because we made time to have lunch together and she has consistently been one of my biggest cheerleaders. I was worried about the isolation of working at home without our lunch dates.
Even with these fears and uncertainty, I left my full-time position and started my own public health consulting business in January 2013. I immediately felt relaxed. With chronic illness, so much is out of our control. Now I could decide when to work and how much to work. I particularly enjoy the opportunity to control the message about my health and my recent work change. No- I am not “too sick” to work. Instead, I made a conscious decision to design an employment situation for myself that was balanced, enjoyable, profitable, and sustainable- flare or no flare.
Prior to January, I would drag myself out of bed at 6:30am- often with a poor night’s sleep due to one nagging pain or another. My husband and I joked that he duct taped me together (i.e., collected my work bag, packed my lunch, found my keys) and shoved me out the door in time to catch the train. By the time I arrived at my desk, I was exhausted!
In contrast, I am now well rested. I sleep until I naturally wake up. My morning starts very calmly with breakfast and conversation with my husband. I’ve noticed that this calm morning carries into the workday. I no longer feel pressured to work early “regular hours” like everyone else. I work when my body is naturally energized (usually 10:00am-6:30pm).
I also use my flexible schedule to integrate exercise or errands into the day when I have more energy. I initially worried that work from home would be too sedentary. After all, I was used to a city commute. So I wear a pedometer every day. If I have not walked enough, I explore the neighborhood or utilize the wonderful indoor track in our town. I also took this opportunity to sign up for joint-friendly aquatic classes offered at our YMCA. The majority of these classes are offered during the “regular” 9-5 workday, so they were previously inaccessible. As I slid into the pool on my first day and immediately felt comforted by the cool water, the instructor recognized the peaceful look on my face. “The water,” she said. “It is like medicine.”
These aqua classes have been a game changer for me. First, they have been a wonderful way to exercise. I feel no pain when I am in the water. Second, they are a great way to socialize- which helps address my fear of isolation now that I’m working from home. With my aqua classmates, I’ve certainly found my place among fellow exercise misfits. We have a mix of older and younger swimmers. Almost everyone has limited ability to exercise “on land” due to obesity or injury or chronic disease or age or arthritis. I love this group of people.
Back home in my office, I relish in my privacy…especially if I have a bad day. I can sit in my office chair or on the couch and pack my hips or hands in ice without drawing any attention to myself. I do not need to explain myself anymore.
Putting together this post, I realize that I am incredibly lucky. I am lucky to be on my husband’s (very good) health insurance so that I can be more flexible with my employment options. I am lucky to work in public health, which is an industry that lends itself very well to contract and consulting work. My business has been busy since the moment I started in January. I am lucky to have incredible friends, family, and colleagues that have helped me get my company off the ground.
And finally (in some ways), I’m lucky for this illness. I know so many people that work their whole lives before realizing that they had no work-life balance, were burned out, and missed out on an opportunity for a better life. Having a chronic illness forces you to consider these questions early. It forces you to put yourself first and it teaches you to be creative in finding solutions for change.
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