Your Rights at Work: Navigating the Workplace With Chronic Illness

By Jessica Sultaire

When you are a child the number one question adults like to ask is: What do you want to be when you grow up? My reply was something along the lines of dolphin trainer or professional cookie taster. My response was never: “Well, Grandma, I’d like to train dolphins assuming I could receive reasonable accommodations and protections should I become chronically ill.” I mean, I would have been an impressive kid if I were that perceptive, but alas no one is prepared for that part of career exploration. Until it happens, it is hard to imagine that there may come a day where you may not be able to perform your job in the same manner as everyone else.

Chronic Illness in the Workplace

When I was blindsided by my own chronic illness, ovarian cancer, I was just beginning my career. On top of the uncertainties of navigating my care and treatment I was also faced with the stark realization that my career may be in jeopardy. I would ruminate over the unknowns: Will I be able to keep up with the work I need to do? What if I run out of sick time? Can they fire me? These are all common and genuine concerns.

Each employer will have their own policies and procedures that will shape your experience in the workplace; however, through experience, I’ve learned that there are laws and protections that many organizations must abide by under U.S. law, plus insurance benefits available to curb the financial burden that unpaid leave creates. A basic understanding of these laws and benefits can help you to be your own best advocate in the workplace.

Americans with Disabilities Act: What It Means for You

Job security should be the last thing on your mind when you’re dealing with a chronic illness, and the Americans with Disabilities Act (ADA) is one piece of legislation that can help ease some of that stress. It is in place to prevent persons with disabilities (both visible and invisible) from being discriminated against in regard to employment decisions. This includes hiring, firing, advancement, compensation, etc. ADA protection does not make one immune to being let go from a job. The reason for termination must be unrelated to the disability or be due to the disability posing a health or safety threat to the workplace.

There is no defined list of disabilities included under ADA making this a gray area for many with chronic illness. For example, a lupus diagnosis is not enough to be considered a disability, so some with lupus are covered and some are not. One person may present with serious respiratory issues that impact breathing, while another will present with a rash and achy joints. Both are serious symptoms of the condition, but to meet the criteria for ADA, one’s disability must limit “one or more major life functions.”

Under ADA, the employer is required to provide reasonable accommodations for their employees. Accommodations are not always physical changes to the work environment. For example, if you take medication to manage your illness and you know that it makes you feel more fatigued in the afternoon, perhaps you can work with your supervisor to ensure that you don’t have meetings after 3 p.m. Other accommodations could include working from home during a flare up, flex hours or incorporating short breaks into your day.

Family Medical Leave Act: Time to Heal

Imagine the frustration of using a hard earned vacation day to cover a hospitalization or day that you aren’t feeling your best. The Family Medical Leave Act (FMLA) comes in handy to help reduce the number of vacation days or paid time off to tend to illness.

FMLA is a glorious protection that allows employees up to 12 weeks of unpaid leave in a 12-month period to tend to personal illness or care for a sick family member, or for maternity or adoption of a child. Some more generous organizations may even continue to compensate their employees through this period of time, but they are not required to under law.

Perhaps you need sporadic days off for regular doctor’s visits, treatments and not necessarily a large span of time at once? FMLA can also be filed as intermittent medical leave. With proper documentation from your care provider, intermittent leave allows up to 90 days that can be taken over the course of a 12-month period. This has been beneficial over the past year as I have received chemotherapy each Friday. I could still take one day per week and remain employed in my position.

Statewide Disability Plans: Offering Peace of Mind

You may be thinking to yourself, great I can keep my job but if I’m not getting paid for my time off how will I support myself? This is a huge concern! Medical care is expensive, kids are expensive, life is expensive. So who can assist?

There are currently five states that have some form of temporary disability insurance: California, Hawaii, New Jersey, New York and Rhode Island. They vary in compensation from state to state but are in place to provide up to a certain percentage of an employee’s salary with proper documentation. In Rhode Island, for example, employees pay into the Temporary Disability Insurance (TDI) fund through income tax making them eligible for up to 60 percent of salary for a maximum of 30 weeks if granted TDI.

If your state does not offer statewide disability insurance, it would be helpful to speak to your human resources representative or employer about supplemental long- and short-term disability insurance plans through private agencies such as Aflac, Mass Mutual, MetLife and others.

Tips for Talking to Your Employer About Your Chronic Illness

Understanding your workplace rights is just half the battle. Actually talking to your employer about your diagnosis can be the most difficult for some, as disclosing a chronic illness can mean revealing an incredibly vulnerable part of yourself. Here are four tips for starting the conversation that I’ve learned through experience and conversations with the HR manager at my workplace.

1. Be honest.

Chances are, your supervisor may not be familiar with the realities of your illness. Within your comfort level, explain what it is like to live with this illness in the context of your daily function and needs. Trust and open communication is essential.

2. Bring a copy of your job description.

This is helpful in navigating a productive conversation about what are considered essential job functions and what are considered menial tasks when determining reasonable accommodations.

3. Get to know HR.

If you work for an organization that has a human resources department or person, they are considered the expert on matters relating to ADA, FMLA, disability benefits, etc. Utilize this person as another advocate, especially if you feel that your supervisor is not responding appropriately to your needs. Formal documentation can also help you down the line should you feel your employer is violating ADA guidelines.

4. Disclose within your comfort level.

You are by no means required to disclose your illness to any other coworkers. If you are receiving accommodations, have a doctor’s appointment or have a flare up, it is well within your rights to keep that to yourself. Disclosing a chronic illness to your supervisor and human resources is confidential information. That said, if you are working with people you consider to have a good working relationship with, disclosing to them can serve as a source of support. You never know who will be your greatest cheerleaders.

Remember, there is a reason you were hired in the first place. Your employer saw something in you that stood out from the crowd. Use this opportunity to remind your employer, and yourself, that despite living with illness you are a valuable asset to the workplace.

In loving memory of Jessica Sultaire. Article originally published June 9, 2016 on Chronicality.com.