Chronic illness is extremely common, and the Covid-19 pandemic has helped normalize talking about it in the workplace. It can be hard to know what to say to an employee with a chronic illness — it’s an emotional topic, and your own assumptions can get in the way of real understanding. There are three steps managers can take to ensure they approach these conversations with empathy and confidence. First, take your own emotions out of it. Second, challenge your views about what counts as great work. Third, approach with curiosity and do your research. The experiences of employees experiencing chronic illness can offer valuable lessons to all employees.
As the Covid-19 pandemic continues to rage through the world and our workplaces — with still little known about its long-term effects — speaking about illness at work has become commonplace. It should be celebrated that discussions of health are increasingly normalized at work. This change presents new challenges for managers, but it’s also a real opportunity to improve how organizations support, accommodate, engage, and enable the best work for all employees.
It’s more than likely that someone you work with suffers from a chronic illness — or that at some point, you yourself will. In fact, over one-third of Europeans aged 15 years or older and nearly 60% of adult Americans are living with at least one chronic illness. Chronic illness can last from several months to a lifetime and can take many forms: arthritis, musculoskeletal pain, diabetes, asthma, migraine, blood disorders, cancer, heart disease, irritable bowel syndrome, autoimmune disease, and a range of mental illnesses like depression and debilitating anxiety. Each year, depression or anxiety account for up to 50% of chronic sick leave in Europe.
Despite this omnipresence, leaders are overwhelmingly unprepared to support chronically ill employees. A study of over 1,000 working individuals in the U.S. reveals that 60% believe that their leaders are unprepared to support employees with a serious and/or chronic medical condition, and nearly 90% are concerned about their own abilities to offer support. Much of this unpreparedness comes from a lack of awareness, understanding, and effective tools. Based on our work with individuals with chronic illness, we’ve come up with a few strategies for leaders to better understand and support employees with chronic illness.
The Experience of Chronic Illness at Work
First, being diagnosed with a chronic illness can be a time of great change — physiologically, psychologically, and emotionally. Receiving a new (and unwanted) label, those with chronic illness are confronted with questions like: Who am I now that I have this illness? How does my identity change? How does my life, my future, or my career change? How will I cope? In particular, the first months to years of this new reality can trigger an enormous and overwhelming sense of grief for the loss of their former life, abilities, and sense of self. They must learn to navigate the intricacies of their new circumstances and may go through a period of trial and error as they adjust and determine how to best manage their energy for optimal output. This may require significant changes to old habits, self-expectations, and ways of working.
Second, those with chronic illness are not lazy, incompetent, or unmotivated, but they worry that you think they are. They can be painfully aware of societal stigma and negative views of others surrounding illness and carry heavy guilt about being a team player, holding their “fair’” portion of the workload, or asking for “special treatment.” Will others see them as weak, as a complainer, or suddenly unsuitable for a promotion or leadership? Do others truly understand that while sometimes they cannot match the average person’s energy and output, they remain dedicated to their work?
Third, for someone living with chronic illness, managing their available energy can be vital for survival. Extreme and debilitating fatigue associated with illness is one of the most common symptoms interfering with occupational performance. One metaphor that many with chronic illness will discover is Christine Miserandino’s “spoon theory.” This suggests that at the start of each day, those with chronic illness have an allotted — and finite — number of spoons of energy. Different tasks (as simple as showering) consume spoons. When the spoons are used up, there are no more. It isn’t that they don’t want to work, it’s that they physically cannot, and doing so could be incredibly dangerous.
“I’ve been in situations where I pushed it too hard or a meeting went too long and I simply did not have the energy to drive home, or even communicate my needs clearly. I had to lay on the floor in my office with the door shut until my husband could come and pick me up. It’s terrifying and embarrassing,” says Sara, who suffers with an invisible and life-threatening autoimmune disease, diagnosed after nearly a decade of work. “I just don’t want to force everyone to end the meeting based on my needs alone.”
As Sara’s experience highlights, it’s easy to ignore or simply forget about the limitations of a colleague with chronic illness, because it’s often invisible at the surface level — in other words, they may not “look sick.” In addition to this, chronic illness is unpredictable, and its effects and expression can change on a day-to-day basis. This means that the colleague who had it all together yesterday may not be able to work with the same vigor today.
Supporting a Chronically Ill Employee
When you discover that an employee has a chronic illness, it can be difficult to know what to do, or if you should even do anything at all. What should you know? Should you broach the topic? How do you ensure the environment you’re creating at work is inclusive and embraces the whole individual and all of their identity?
Chronic illness is an intensely personal and private topic, and some will be more receptive to openly discussing and acknowledging it than others. Do not directly ask an employee whether they’re “ill,” but create the space for them to discuss how you can support them and enable them to achieve their optimal engagement. Here are a few tips that can help you approach the topic with more confidence and empathy.
Manage your own emotional response. Learning of an employees’ illness can bring up uncomfortable emotions in yourself. You might experience sadness, worry, frustration, pity, fear, or even helplessness. These are your own emotions and not the responsibility of the employee. It’s also not uncommon to feel some level of envy for the perceived “perks” that the person with chronic illness is offered. Envy may be a sign that you need to take better care of yourself at work. If you (or your colleagues) are envious that someone with a chronic illness takes a full lunch break, works from home, or has flexible hours or a better office chair, consider what it is that you need to best take care of your own energy and balance, and consider discussing this with your own manager.
Challenge and update your assumptions about what’s “normal.” Reflect on your assumptions and expectations of their abilities when assigning tasks and deadlines. For example, assuming your employee should be able to do something after they’ve communicated that they cannot, or offering advice about how they should best manage their illness, is a sign that you may not truly understand the limitations they’re facing. To cultivate your own empathy and understanding, consider what information you need to know, read, and research to understand their experience. Also, reflect on what beliefs or values you hold that may be confronted by their behaviors or their illness. One chronically ill woman we interviewed was told by her colleague, “I don’t really believe in being sick, it’s all ‘mind over matter.’” Working with chronically ill colleagues is an opportunity for you to grow and develop as an inclusive leader.
It’s also important to challenge your team or organizations’ assumptions about what constitutes “great work.” In a society that increasingly values and even celebrates cultures of overwork and pushing yourself to your limit, to someone with chronic illness, this is not only impossible, but it’s dangerous and can even be life-threatening. As a leader, ask yourself, what and who do you celebrate at work? Do you find yourself valuing the people you see answering emails at midnight, pulling all-nighters, or boasting about a 70-hour work week like it’s a badge of honor? How can you celebrate the contribution of all employees?
Ask questions, and be open to learning and adapting. It’s important to educate yourself about chronic illness so you can create an environment that accommodates the needs of all of its valued and diverse employees. This can start with some basic research on chronic illness, reaching out to HR to understand the services available to managers and employees, then progressing to having a one-on-one conversation. Importantly, do not bring up the illness in group meetings or public situations unless the person with the illness invites and initiates the discussion.
If you’re not sure how to start, you might ask your employee what they think you should know about their illness. What needs to be accommodated? What have they learned about themselves and their abilities in managing their illness? Sometimes very small changes can make a huge difference, both physically and psychologically. In doing this, you’re allowing them to impart some of the wisdom they’ve gained about their own unique situation. Each person will manage their illness differently so as to minimize its impact on their work.
If you work together closely, you might also ask them if they’d like to make space to discuss their illness periodically. For most, the illness will change day to day and year to year. Developing trust and a language around constructively managing the illness in the workplace demonstrates that it’s okay to enforce their own boundaries and limitations and adjust their needs over time.
Finally, there are hidden opportunities for leaders and their organizations in addressing and accommodating employees with chronic illness. Health, wellness, and energy management is an important and unaddressed need of all employees. The chronically ill often become masters of self-awareness and energy management; in order to continue to do their best work, they’re forced to know and advocate for their well-being needs. Their experience can offer valuable lessons to colleagues — those who are currently “able” and those who may be confronted with their own chronic illness in the future.