As someone who’s battled multiple, chronic health issues, I know firsthand that maintaining a full-time job while living with a chronic illness is tricky business. Pushing myself day in and day out as an occupational therapist left me feeling exhausted, frustrated, and drained. A constant lineup of symptoms left me wondering if I was doing more harm to my body than good. Eventually, I was forced to make the difficult decision to leave my job and focus on my health. My body no longer allowed me to do both. For many of you, quitting your job or going part-time simply isn’t an option, and you wrestle with the question: Can I navigate full-time employment while managing a chronic illness?
To help you answer this tough question, here are eight tips from two people who have managed to strike a balance between working and living with an illness.
1. Decide if it’s helpful to disclose your condition to your boss or colleagues.
In some situations, you may choose to keep your health information private. But for former special education teacher and education consultant, Barb Zarnikow of Buffalo Grove, IL, telling her colleagues about her 20-year battle with interstitial cystitis — an inflammatory bladder — was what she needed to do to avoid feeling overwhelmed.
“I chose to tell my principal and my colleagues about my illness because I needed their support. I would ask a colleague to cover my room when I needed to use the restroom. Having others understand these needs helped lessen my stress,” she says.
2. Understand your company’s policy regarding the Family Medical Leave Act (FMLA).
Under your company’s FMLA policy, you may qualify for Intermittent Leave, which allows you to periodically call your office when you are too ill to work or have a doctor’s appointment without getting penalized for the missed hours or days.
According to the Employee’s Guide to the Family and Medical Leave Act, you must work for a covered employer in order to qualify. Generally, private employers with at least 50 employees are covered by the law. Private employers with fewer than 50 employees are not covered by the FMLA, but they may be covered by state family and medical leave laws. This is something you can talk to your company’s HR department about.
Also, FMLA requires you to have worked with your current employer for at least 12 months, accrued a minimum of 1250 hours of work in the last 12 months, and be employed by a company that has a minimum of 50 employees within a 75-mile radius of your jobsite. This benefit can be a valuable way to ease the worry of periods when you need time to rest and recover, while you still keep your job in good standing.
3. Develop a good rapport with your doctor.
For Zarnikow, having a doctor-patient relationship with open communication has played a crucial role in helping her maintain full-time employment in a fast-paced environment. Using your doctor as an ally can be very helpful, she says.
“My doctor offers any treatments that are available to help me function better on a daily basis. He understands the demands of my job, and that I need treatments that will not impair my thinking in any way.”
Also, remember: If you feel like your doctor isn’t hearing your concerns, don’t be afraid to look for a new one.
4. Educate your family and friends about your illness.
Maureen Maloney, who lives with chronic Lyme disease, is the director of business development, marketing, and contracting for two behavioral health hospitals in Chicago, IL. In addition to her busy work days, Maloney juggles an aggressive treatment protocol. To handle full-time employment and a chronic illness, she discovered it was necessary to educate her family and friends about the realities of living with Lyme disease. Maloney suggests empowering your loved ones with useful information.
“Take time to collect good material that is easy for your friends and family to understand, and sit down with them to talk it through. You must make time to inform them about your struggles. Many people will want to help you, so let them!”
5. Write down everything.
For people with certain chronic illnesses, remembering a long agenda can be nearly impossible due to fatigue, brain fog, medications, or other reasons. To stay organized, Maloney began carrying a journal wherever she goes. Each morning, she makes her to-do list of the necessary items she needs to tackle that particular day. But not every item makes her list.
“I have learned not everything is important, and you have to know what is a priority and what is not,” she says. As you finish a task, cross it off your list, so you have a visual representation of your accomplishments at the end of each day.
6. Respect your limits.
Honoring your body and not pushing it to the max are vital to creating a healthy work-life balance.
“Sometimes, I have to take time for myself. When I get home, it’s straight to the couch. Even the simplest of tasks can exhaust me. I have to sleep and rest on the weekends; it’s the only way I can manage to stay working,” says Maloney.
Learning to rest and saying no to other activities helps her have the strength to do her job.
7. Find activities that restore your mind, body, and spirit.
For Zarnikow, activities like lying down to rest, taking a walk, or attending a yoga class help reinvigorate her for the next day. The key to not overdoing it?
“I gauge what I feel my body needs at the time,” she says.
Whether it’s meditation, reading a book, or a different activity, find something that works for you to recharge your internal battery and bring joy to your life.
8. Prioritize sleep.
In his 2015 webinar, best-selling author, board-certified internist, and renowned chronic illness expert, Jacob Teitelbaum, MD, recommends getting eight to nine hours of solid sleep per night to replenish your body’s energy reserves. Although it’s easy to stay up late watching TV or scrolling through your social media posts, these activities can be stimulating for many people. Instead, try to go to bed before your second wind hits (preferably before 11:00 p.m.). Better sleep quality leads to reduced pain, improved cognition, and increased energy levels — all things you need to continue doing your job well.
Without a doubt, it can be a monumental task to find the energy to sustain a full-time job while you deal with a chronic illness. One of the greatest lessons we can learn through our struggles is to pay attention to the signals our bodies give us to slow down and rest. This is a lesson I continually have to relearn. With some trial and error, hopefully these tips can provide some new tools to support you in your health and work life. If you have your own advice for how to manage work with a chronic illness, please share it with me in the comments!
Jenny Lelwica Butaccio, OTR/L, is a Chicago-based, freelance lifestyle writer and a licensed occupational therapist. Her expertise is in health, wellness, fitness, chronic illness management, and small business. For more than a decade, she has battled Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is the creator of the DVD, New Dawn Pilates: Pilates-inspired exercises adapted for people with pelvic pain. Jenny shares her personal healing journey on lymeroad.com with the support of her husband, Tom, and three rescue dogs (Caylie, Emmi, and Opal). You can find her on Twitter @lymeroad.