Guest Post by Melissa Martini

I don’t work 40 hours a week; I work 168 hours a week and I probably always will.

Before COVID, I worked a full-time office job. I’d wake up earlier than my body wanted me to. Force myself out of bed despite the pain and fatigue. Chronic illness has always made every day a struggle, but I still worked 9 am to 6 pm. I even worked through my lunch hour, just like everyone else. And then? Commuting home took another chunk of my day, leaving little time to do anything other than eat dinner and go to sleep. 

In the office, I was glued to my desk, feeling judged for basic needs like stretching and bathroom breaks. I resorted to bringing heating pads to the office and kept painkillers in my desk. Many others with invisible illnesses like these suffer in silence, out of fear of losing their job or being looked down upon for their chronic pain. It is scary to ask for help even if you need it. 

The Widespread Reality Of A Hidden Struggle

Chronic pain and illness impacts many more employees than meets the eye. Employers may not fully grasp just how many of their employees may be suffering in silence. Did you know that the Centers for Disease Control and Prevention reported that about 60% of Americans live with at least one chronic illness?

According to the Corporate Finance Institute, benefits can be so attractive that employees do not want to leave an organization. This forces employees to wear a type of “golden handcuffs,” working in roles that are undesirable for the sake of keeping an insurance plan that covers their illness or disorder’s treatments and medications.

This isn’t a call for special treatment or a free pass for every chronically ill employee. Instead, it’s a call for a broader societal shift. The realization that our existence is not purely to work, and most folks work better when they’re not forced into a schedule that doesn’t work for them.

Redefining Work Norms for a Compassionate Workplace

It would be great if employers prioritized supporting their employees’ needs, creating and fostering an environment in the workplace that focuses more on their employees’ potential. Rather than perpetuating these outdated norms, try redefining work with compassion for a diverse workforce.

Creating a culture of empathy and job security encourages inclusivity, empowering chronically ill employees to contribute their best to the company’s success.

Here’s where I think employers should start in this process:

1. Openness to Remote Work: It should go without saying, but embrace remote employees. It’s a fundamental aspect of modern work.
2. Ditch Set Hours: In 2023, the 9-to-5 has evolved into the 9-to-6, but not everyone can operate on this schedule. Personal productivity varies, and employees should have the flexibility to work when they feel most productive. Trust your team to deliver results, especially recognizing the unique challenges faced by chronically ill employees.
3. Comprehensive Benefits and Health Insurance: A truly supportive workplace provides health insurance that includes mental health care, and chronically ill employees should feel comfortable flagging if something they need is not covered.
4. Unlimited Sick Days: Predicting the number of sick days needed in a year is impossible, particularly for those facing chronic illnesses. Trust your employees to judge when they are unfit to work and when they can contribute effectively. Fostering a culture of trust and flexibility is crucial, recognizing that health can be unpredictable, and productivity is optimized when employees prioritize their well-being.

Navigating Job Search With Chronic Illness: Practical Strategies

You can make choices in the job search to make living with a chronic illness easier. It’s clear that folks like me and others with chronic illnesses can’t conform to the same work hours, so we need to start talking about it more often. What can we do, as chronically ill employees, to remain productive and present in the workforce?

1. Switch to Contract Work: Take control of your work life by switching to contract work. Set your own hours and rates based on your unique skills. Identify what you excel at—whether or not it aligns with your formal education—and market it. There’s always someone out there in need of the skills you have.
2. Implement the Spoon System: If you’re chronically ill, adopt the Spoon System to manage your energy effectively. Assign a specific number of “spoons” to different activities, planning your day based on your available spoons and the energy each task requires. Share your spoon count with your employer if you want, or use it for personal organization to set realistic expectations for your workday.
3. Embrace Remote Work: The switch to a fully remote role can be a game-changer for those facing chronic illness. Working from home provides the flexibility for extra rest when necessary and access to pain relief without the judgment of coworkers.

Most of all, if there’s one thing both employers and employees can work on practicing, it’s compassion. We’re all human—flawed, yet deserving of grace. The key is caring for the well-being of both employees and oneself. Embrace more kindness and exercise more patience. People want to love their jobs, but if work becomes an obstacle, making life difficult, they’ll seek alternatives that don’t turn their lives into a living hell.

Life Workplace Trends chronic illness compassion