A Huge Hurdle to Employment for People With Chronic Illness — And What Would Help

I have a vivid memory of crying on the phone to my mom when I was a child because I missed her. I was in Vermont with my dad, grandparents and two of my siblings while she stayed home with my younger sister who was very ill. That’s the first real memory I have of my sister’s lifelong struggle with chronic illness, and unfortunately she’s missed out on much more in her life than just that trip to Vermont.

During my teen years, I watched my sister go through periods of extreme pain, what seemed like a million doctor’s appointments in which they could never really figure out what was wrong, followed by multiple surgeries. She struggled to form strong bonds with friends because she felt that no one could quite understand what her life was like, to the point that she simply stopped opening up to people about what she would go through. She missed school sometimes and certainly missed out on a lot of teenage milestones. She still graduated on time and headed off to college and I remember crying at her graduation because I was so proud of how far she’d come while dealing with such a hard physical (and emotional) struggle.

Now, as an adult, my sister continues to live with chronic illness and pain. She successfully graduated from college, although there were some very difficult periods of time, and became a nurse. She wanted to be a nurse because she cares so much about other people and she’s been on the opposite end of nursing care so many times that she wanted to make a difference for other people with serious health conditions. Unfortunately, adulthood has only made things more challenging for her.

See, the thing I’ve learned about chronic illness is this: Oftentimes it is invisible to others (especially those you work with) and you never really know when you’re going to have a flare-up. You live with a certain amount of constant anxiety, not knowing when the next cycle of your illness will arrive. It’s impossible to plan for, especially financially. And the U.S.’s current lack of paid family and medical leave is a huge hurdle for people with chronic illness who truly want to maintain steady employment.

It’s a common misconception that most people take paid family and medical leave for parental leave. In fact, according to the Institute for Women’s Policy Research, the majority of the employees who take this type of leave in California, New Jersey and Rhode Island, the three states with enacted systems of paid family and medical leave, take it for their own serious health issue.

I know that paid family and medical leave would greatly benefit people like my sister who live with serious illnesses, because during those times when it is too challenging for them to work, they would be able to take paid time off to take care of themselves. People in this position shouldn’t be punished for being ill. They should be allowed the time off they need to come back to the workforce as happy, productive employees.

Another important component of paid family and medical leave is the ability for a parent to care for a sick child. If my state of Connecticut had this system when my sister was growing up, my mother would have been able to make more advancement in her professional career because she would have had access to paid time off during the times that my sister had major surgery. Instead, my mother worked a retail job so she could get most of her hours in on the weekend and then be there for my sister during the normal work week when doctor’s offices are open. My mother passed up opportunities for advancement in her job that would have provided her with a higher salary because she was the main caregiver in our family. And with four children, she and my father had a lot of mouths to feed; some extra money in her paycheck would have gone a long way. She says now that she missed out on all the fun (weekends) and took care of all the business (appointments, care of my siblings).

According to the Centers for Disease Control, about half of all American adults — 117 million people — have one or more chronic health conditions. Half of the American population cannot continue to wait — the time is now for paid family and medical leave. Seriously ill employees shouldn’t have to worry about how they are going to pay their bills at the same time as they worry about how they will get through the day.