Finding Work-Life Balance with Chronic Illness
by Kristy Bastone-Baker, LCMHCA, NCC, C-AAIS, MEd, MA, RYT-200
February 15th, 2023
Managing Chronic Illness is (at least) a Part Time Job
I often tell clients that managing chronic illness is like having a part-time job that sometimes becomes a full-time job. Granted, it's not a paying job, but you get what I mean. There are appointments, procedures, therapies (e.g. physical therapy, counseling, etc.), dealing with insurance, medication (taking it as well paying for it), medical equipment, etc. It can be not only a time suck but an energy suck as well. This is above and beyond the energy, it takes to simply complete daily tasks.
So, first, acknowledge that simply having a chronic illness is a job in and of itself. There are good days and bad days, which can be unpredictable and exasperating. Keeping this in mind, here are a few tips for finding a work-life balance while managing a chronic illness.
Disclaimer:
I acknowledge that even considering "work-life balance" has a level of privilege to it. It assumes that you have enough money and resources to meet basic needs and the flexibility to alter your current work and/or home environment. If you're treading water right now and struggling to make ends meet, I am also researching tips to be published in a later article. Just keep surviving and reach out for help as you need it.
Recognize There is No 'Perfect' Work-Life Balance
First, it may seem counterintuitive, but recognize that there is no 'perfect' work-life balance. Human beings are complex and have a variety of needs, interests, and roles. How we choose to spend our time and live our lives looks different because of how unique we all are. We can respect others' ways of being while still trying to find what works best for us. This applies to everyone, even those not struggling with chronic illness.
Set Realistic Expectations
Instead of seeking a perfect schedule, strive for a realistic one. When navigating chronic illness, there are some days you might have more energy (or more spoons) than others. Some days you might pursue other hobbies, whereas at other times, your family or loved ones might need you. And that's okay.
Look for balance over time, not in a single day
Being flexible and identifying your values and priorities can help. As a counselor at Chronic Hope, I often incorporate determining and prioritizing clients' values into the therapeutic process. My clients then gain insight into what's important to them, which helps them decide how to allocate their time, energy, and resources.
Listen to Your Body and Prioritize Your Health
Above all, listen to your body and prioritize your health. This can also include looking for ways to increase self-care and improve the environment. "If you need to see a doctor or get treatment, do it. Don’t put it off because of work. If you’re not at your best, you can’t do a good job." -Harper Spero, blogger, and entrepreneur who also navigates chronic illness.
Spero maintains that if your job is stressful with long hours, it's even more critical that put your needs first. Scheduling short breaks or naps (if the environment permits it), ensuring you get meals and snacks, and practicing sleep hygiene are all ways to prioritize your health.
Set Boundaries and Work Hours
A silver lining resulting from the COVID pandemic is increased opportunities to work from home. This can allow a more flexible schedule and opportunities for self-care. But it also means being more intentional about when you stop working.
To avoid burnout, schedule time off the clock when you try not to think about work and stop answering emails. This is sound advice for everyone, but especially those managing chronic illness who need rest and downtime. Consider using separate emails, browsers, or filters for work and personal systems. I often include boundary setting in the therapeutic process, where we explore boundaries the client wishes to set, and how to communicate those boundaries with others.
Look for Ways to 'Sneak in' Some Self Care at Work
If working from home is not an option right now, look for ways you can alter your work environment. 'Sneaky' ways can include stashing snacks or small meals, bottles of water, face masks, hand sanitizer, and an air purifier in/near your workstation. Some find that a standing desk can be helpful, too.
Consider Communicating With Work Leadership
Ideally, if you and your boss or manager have a positive relationship, this can mean keeping the lines of communication open and letting them know what you need.
Open and authentic communication with work leadership can aid in managing expectations, particularly when you may need to alter your schedule or workload. You might have to provide your boss or manager with some education, as they might not have experienced these circumstances before.
Look for Flexible Work Opportunities
Every boss and workplace is different. Pay attention to how your work environment treats its employees, particularly those with chronic pain or illness. If an organization insists on "full-time hours," and/or time off is non-existent, keep in mind that this organization might not be a good long-term fit for you. It might be time to look for other opportunities.
Consider going into business for yourself, if that option is available to you. That's exactly what Jennifer Sutton, the owner of Chronic Hope Counseling did. As she navigated her career along with her chronic illness, Jennifer struggled to find a work environment flexible enough to meet her needs. So she created one. That's how Chronic Hope Counseling came to be.
Find the Right Accommodations
Communicating with HR and inquiring about benefits, accommodations, or laws might be beneficial. Many of my clients end up doing their own research and acting as their own advocates. Talking to others in similar situations can also be helpful, too. Chronic Hope has free, online support groups, where you can chat with other members of the chronic pain/illness community, share ideas, and bolster support.
Finding Accommodations Can Be Difficult
According to Alex Haagaard, a disabled writer, designer, and activist, finding accommodations can be tricky. Though the Americans With Disabilities Act mandates employers to implement “reasonable accommodations,” many chronic illness sufferers discover that the accommodations they need are labeled 'unreasonable' from the beginning.
Part of the issue is that disability rights laws (like the ADA) only protect accommodations if they don’t cause “undue hardship” to the employer. As you can imagine, "undue hardship" is open to interpretation, particularly if your illness is invisible with complicated needs that can alter over time.
Unfortunately, there’s no simple answer to this. Linking up with local disability advocacy groups and building support networks with coworkers can be helpful.
Research Local Resources and Sick Leave Laws
Start researching local resources designed to help. North Carolina has the NC Client Assistance Program (NCCAP) which helps people with disabilities get connected with vocational rehabilitation services, independent living programs, and community rehabilitation providers. Here's a link to their brochure. They can help you achieve employment goals, live more independently, and participate in the community. (FYI, their website also has an impressive "links of interest" section towards the bottom.) It can also help to research local sick leave laws. Some states require employers to provide sick leave. As of Feb 2023, employers in North Carolina are not required to offer paid or unpaid sick days, though there have been efforts to try to change this. Some employers, however, have their own policies that include paid sick leave, so it's worth looking into what your employer provides.
FMLA Options for Chronic Illness
Furthermore, NC "companies with at least 50 employees for at least 20 weeks must comply with the Family and Medical Leave Act." -North Carolina Justice Center. According to the U.S. Department of Labor, "employees continue to be able to use FMLA leave for any period of incapacity or treatment due to a chronic serious health condition."
Chronic Hope is Here to Help
In conclusion, work-life balance will likely look different for each of us. What works for some may not work for others. Striving for work-life balance is a process, and Chronic Hope is here to help. We can figure out how work-life balance looks for you and find ways to help build it. Or we can simply listen as you process your options. Or none of these. It's up to you. :)
Interested in Starting Chronic Illness Counseling?
At Chronic Hope Counseling our skilled team of therapists has first-hand knowledge and personal understanding of chronic illness and all the trials that accompany it. We want to support and guide you on your journey to understanding and living with chronic illness in a nonjudgmental and caring environment. Follow the steps below to get started on the road to living your best life.
Get to know our team of caring therapists.
Book an appointment on our convenient contact form.
Begin your journey to emotional well-being.
Other Counseling Services Offered at Chronic Hope Counseling in North Carolina
In addition to Chronic Illness Counseling, we also offer a variety of other services that are geared toward people who exist within the world of chronic illness and pain. These include Chronic Pain Counseling, Chronic Fatigue Counseling, Long Covid Counseling, Ehlers Danlos Counseling, Family and Relationship Counseling Nutritional Therapy, as well as Caregiver Counseling and Support. We even offer support groups for caregivers and groups for people dealing with chronic pain and illness. If you are hurting, we see you and we care. Reach out to us today!