Chronic Illness In The Workplace: How To Honor Your Needs, Manage Expectations, Maintain Privacy an
Having a chronic illness is difficult. If you have a chronic illness and/or chronic pain, it’s more than likely that your pain and illness currently impacts or will impact all areas of life at some point or another; Friendships, intimate relationships, familial relationships, socialization, diet and exercise and career/work. Dealing with chronic illness and how it impacts your personal life is one thing but managing chronic illness in the workplace can be even more challenging. People with chronic illness are often dealing with an internal conflict about if, how and when to approach health needs in the workplace as well as how those needs may impact their career in both the short and long term. Asking for something “different” or “special” is often associated with limitation, weakness, laziness or inadequacy and when we have to ask for a pass, an exemption, a little extra time, a break or time off, we worry that we’ll be viewed as someone who is risky, difficult or high maintenance or even someone who simply can’t keep up.
Bringing chronic illness into the workplace can bring about feelings of fear-Fear that chronic illness and pain could impact the way others see you, Fear that chronic illness could determine whether or not you get the job or the assignment you were hoping for, or Fear that chronic illness could cause others to question your work ethic, honesty or work performance. The truth is, more often than not, people who suffer from chronic illness and chronic pain often work harder and push themselves even more than their counterparts in order to make up for areas where they may fall short as a result of health needs. And unfortunately, overcompensation, overworking and ignoring the body’s signals to slow down or step back can lead to an increase in stress, inflammation and can cause symptoms to worsen.
Perhaps you’d prefer to manage needs related to your illness privately, without any special consideration or “slack”-Just like everyone else. BUT letting others know what’s going on is an essential part of the care and maintenance of your illness, your wellness AND your mental health. While you may feel like you’re asking for a favor, a hand out, or an exemption, it’s far better to be clear about needs or potential needs early on so that others don’t make the above assumptions about you. Remember, people around you are going to make assessments, judgements or assumptions about you based on the information they have...Not on information they don’t have-So why not fill them in?
While bringing chronic illness into the workplace can be hard, there are a variety of steps you can take to make sure to honor your needs, manage expectations, maintain a level of privacy that you are comfortable with and protect your job:
Build Your Team
Develop and build a relationship with a good doctor and/or team of providers. While it’s always important to have a good relationship with your healthcare provider, it is especially crucial when you have a chronic illness. This could include primary care doctor, specialists, nurse practitioner, therapist, psychiatrist, acupuncturist or any combination of the above. Having a good team is an essential part of your care but also a key part of your bringing your chronic illness to the workplace. A trustworthy team can back you up with any medical information or documentation that might be necessary to support your needs as they relate to any special considerations, accommodations or modifications in the workplace.
Be Honest And Upfront
When you suffer from chronic illness, it is important to be honest and upfront with the people in your life. That includes family, friends, life partners, colleagues and managers. Being honest and upfront does not mean that everyone get the same information but everyone should have SOME information about your illness and the ways it may impact you, them and any responsibilities or expectations. Consider how and what you want to communicate about your disease to varying groups. For example, close friends and family support your needs in a more intimate way, so they may benefit from more detailed information about your illness, how it might impact your relationship with them and how they might support you when you are well as well as when you are struggling. Colleagues and supervisors can benefit from information about your illness that relates to your job- That means, providing information related to how your illness might impact your workload, work performance, schedule and any special considerations or modifications that you might need. With the proper information, your team, your colleagues and your boss will be prepared to support you in appropriate and meaningful ways.
Do Your Research
...Know your rights. As a person with a chronic illness or disability, you may have the right to reasonable accommodations both in school or work settings through laws such as the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA), and Section 504 of the Rehabilitation Act of 1973. While there are eligibility requirements for potential services and accommodations, if you have a well documented chronic illness, it is likely you will qualify for accommodations or modifications at work or at school. Having some accommodations in the workplace (or simply knowing that those accommodations are available to you should you need them) can help to lower stress and the symptoms that are associated with an increase in stress and can help in learning to balance needs with work performance. Not sure if your chronic illness would be considered a disability? “A disability is now defined as a condition that substantially impairs a major life activity—even while that condition is in remission (which is broadly defined as the absence of disease activity).” *
Some examples of reasonable accommodations for someone with digestive disease might be:
Allowing enough time for frequent restroom breaks
Moving an employees’ workstation closer to a restroom
Time off or unpaid leave for doctor’s appointments, flare-ups or hospitalizations
Providing flexible work schedules, work from home, or telecommuting opportunities
Reassignment to a different position
Prepare Your Speech
It’s likely you’ll feel comfortable sharing different things with different people depending on their role in your life. It is important to be prepared for a variety of different conversations so that when it’s time to talk about your illness, you share the information that you actually want to share rather than information you might include when under pressure or when caught off guard. Your speech should include enough information to make it possible for the people you interact with to support and understand you, while maintaining the level of privacy you are most comfortable with. Communicating about your illness can sound like: “I have a chronic illness that, when I experience symptoms, may require some accommodations” or “ I have a chronic illness and sometimes I have to slow down” or “Because of my chronic illness symptoms, I may have to step out of the meeting for a few moments” or I am currently experiencing a flare of my chronic illness symptoms and I may need to rest in the middle of the work day for a few days/weeks.”
When preparing and practicing your speech for multiple audiences, consider the following:
Who am I communicating with?
What is important for them to know?
How might my chronic illness impact my work with this person?
When (if at all) is it helpful to share?
Start a Paper Trail
If you have a chronic illness, it’s important to document your condition whether you’re currently experiencing symptoms or not. While your medical file is valid and relevant regardless of when you provide documents to your employer, it’s better to have documentation organized, on file and in its proper place from the start. If possible, set up an appointment with your Human Resources department so that you can discuss your needs and provide the proper documentation for your file. Having your medical needs documented with Human Resources and/or a department equivalent or your supervisor (if you don’t have a Human Resources department at your job) can help to protect your job and protect you against any discrimination or mistreatment related to your illness or disability in the workplace. Human Resources and/or an equivalent department will also be a great resource for any information or support related to medical leaves, flexible schedule or other accommodations you may need.
* Sources (and for more information about IDEA, ADA and Section 504)