By Abbie Cornett
People with chronic illness face many challenges with managing their disease and the effects it has on their day-to-day lives. One of the most common challenges is how to juggle work requirements and chronic illness. Patients often miss work because of illness, doctors’ visits or the need to receive their medication, placing them in the difficult position of having to choose between their health and their job.
As a common variable immunodeficiency patient, this issue is very important to me. In the past, I faced sanctions at work for missed days, as well as serious financial difficulties due to lost work and medical bills. To my own detriment, I postponed or canceled treatment or doctors’ appointments because of the fear of losing my job. But, this is not the right decision; your health must come first for both your own well-being and the well-being of your loved ones. If you are not healthy, you can’t be there for your family, and your ability to work is diminished.
As the patient advocate for IG Living, I am very fortunate that I now have the flexibility to receive my IVIG therapy and still work full time. While I know how lucky I am, I know this isn’t the case for most people. And, because of my past experiences, I have some suggestions for juggling work and illness.
First, I cannot stress enough how important communication is; speaking with your employer regarding your needs is vital. In the past, I tried to hide my illness. I worked in an environment that stressed physical fitness, so I was embarrassed about my disease. I felt that being sick made me weak. But, by not talking about my illness with my employer, I alienated them. Had I openly discussed my health and asked them for accommodations, it would have saved a lot of hard feelings on both sides. Many employers value their employees and are willing to offer such options as flex-time or the option of working from home part time, thus allowing patients to continue working and receive a steady income. Offering accommodations is a win-win for everyone involved.
Second, to reduce the number of absences and/or lost wages, I advise patients to look at their work schedule. How many federal holidays are you off? It’s possible that your physician sees patients on those days. An example is Veterans Day; many physicians’ offices are open, but a lot of people are off work. By scheduling appointments on holidays, I was able to reduce the number of days I missed a year. Also, check to see if your physician has weekend hours. Many physicians, in responses to their patients’ requests, now offer Saturday morning hours.
Last, because I worked for years at a job that was not as flexible, I had to learn what my rights as a patient are. The first thing I advise you to do is become familiar with the federal laws that are in place to protect you, such as the Family Medical Leave Act and the Americans with Disabilities Act. Both of these laws provide protections for employees with chronic illness or disabilities.
Most importantly, take care of yourself first. In the past, I made poor choices regarding my health. I thought work was more important, and I paid the price. Because I ignored my symptoms and didn’t take the time I needed to get well, I ended up crashing physically and spent months in and out of the hospital. I learned the hard way. If you don’t take care of your health first, you won’t be able to work at all.
How do you juggle work and your illness?