The Side Effect of Chronic Illness We Don't Talk About Enough

When I was seeking treatment for my illness, chronic fatigue syndrome, the first thing I learned was the importance of rest periods. Right from the beginning, it was drilled into me that I must make sure I include enough periods of rest so I don’t burn out and feel even more exhausted than I already do. I was told to plan out my day and grade every activity on the amount of energy it would require of me. I’d label these activities low, medium, and high level, and I’d make sure to separate them with the appropriate amount of rest periods. A few low-level activities in a row were fine, but mixing high and medium levels together required a lot of rest in between.

And so, I would plan out my day filled with both activity and rest, and I would stick to the timetable I’d created for myself. However, as I rested between each draining activity, I realized the one thing those treating me had neglected to talk about – resting is boring. It is infuriatingly boring. I would find myself so frustrated when I knew it was time for me to rest that sometimes I would decide not to do it at all. Of course, then I would feel ill from doing too much and would spend the next few days recovering.

It was clear that I needed to rest, I just needed to find a way of doing so that wouldn’t annoy me so much. This is when I started experimenting with rest activities. I’d look for things I could do that would only take up a small amount of energy, so I was still getting the benefits of resting without getting frustrated. It took a while for me to work out what was a rest activity and what was a low-level activity. For example, for many people reading a book would be a restful and relaxing activity. For me, it is more of a medium to high-level activity as it takes a lot of concentration which drains my energy. After a while, I realized activities such as doodling, coloring, and listening to relaxing music were engaging enough to keep me happy but not too mentally straining that they would exhaust me. I now use these activities as resting techniques regularly and have found it much easier to rest.

Despite what I have said so far, I know there is value in completely resting and I know my body benefits from it. Therefore, I’ve decided to change my perspective on boredom. Although I know it can be frustrating to experience, I now understand a bored mind is a perfect place for creative thoughts to appear. Since embracing boredom as a regular but necessary part of my day, I have been able to think about ideas that had never occurred to me before. Both my writing and art have improved as I’m able to see things from different angles and perspectives. Boredom gave me the space to create my own website and use it to talk about chronic fatigue syndrome in a new way, as well as share the different ways I have learned to manage it. It gave me the idea to use my art as a way to communicate with others about the daily realities of chronic fatigue syndrome, whether they have the condition themselves or they wish to learn more about it.

Embracing the boredom that living with chronic fatigue syndrome can bring has brought some unexpected joys into my life. I still get annoyed at times, but I remind myself of the benefits boredom can bring to both my body and mind. It’s time we started talking about boredom in the chronic illness community and seeing it for what it is — frustrating and wonderful.