The Struggle of Being a Teacher with Lupus

As a teacher, the beginning of the school year is usually the most hectic time of the year for me, even though I teach privately (one-on-one violin lessons) rather than work in a public school. Scheduling the students I teach takes hours. While I love my job and I especially love my students, getting back into a school year schedule feels like being sucked into a tornado. And on top of working and being present for my students, managing my lupus takes hours of my day every single day.

Because I don’t look sick, my students and fellow teachers often don’t realize how hard it is for me to not only hold down a job, but to simply get through the day. Even when my lupus is under control, I still live with daily chronic fatigue.

Sleep and fatigue

I wake up each morning feeling exhausted, even after nine or more hours of sleep. My fatigue is the main reason I’m not able to work full-time. I haven’t been able to work a regular, full-time job since I first got sick with lupus. I often feel thankful that my first symptoms appeared when I was not in high school but in college, where my class schedule was lighter.

I need an average of two hours more sleep than an able-bodied person. Every three to four days, I need eleven or twelve hours. Because my fatigue affects me more in the mornings than at night, I don’t schedule any students before 11:00am. I’m not able to start work at 9:00am, let alone 7:30am, which is the start time of the local high schools in my district.

I occasionally have parents of new students ask to have their lessons early in the day. I sometimes take the time to explain to them why I’m not able to work in the morning. More often, I politely but firmly maintain my boundaries.

Balancing energy levels

In order to stay out of a flare and to counteract steroid-induced weight gain, I have to exercise three or more times a week and also eat healthy. Teaching requires emotional energy as well as physical energy. While gentle exercise helps boost my energy levels, it can be difficult to find the motivation to exercise or cook a nutritious meal after teaching all day.

Quite a few of my friends who are also teachers admit to having the same problem. We all want to have energy for our students, but exercising to increase our energy also requires energy.

Productive, even with lupus

Like every teacher, I try to be a good role model for my students. This means walking the line between being open about living with a chronic illness and not scaring the children I teach by going into detail about the severity of my illness. When I have students who have chronic health conditions themselves, I mention that I live with a chronic condition, also.

It’s important to me that my students see that I am still able to live a happy, productive life even with lupus.

Ultimately, living with lupus adds a layer of complexity to a job that, while rewarding, is already challenging. Even as a teacher, I don’t have all the answers when it comes to balancing lupus and a career in education.

I can only try my best to put my health and well-being first while being the best teacher I can be.