The end of the year came with deep relief. I had dealt with my juvenile arthritis diagnoses all year long. It created a year that was difficult to get through, but I had managed. I did get through it. And now the sun shines, and I have no responsibilities whatsoever.
The thing is I mistakingly assumed that having no responsibilities would somehow be a cure for the fatigue that comes with having an autoimmune disease. That is, with no responsibilities for the fatigue to affect, how could it be a side effect that makes me suffer?
Yet a summer with chronic fatigue is arguably even worse than a school year with chronic fatigue. Many of my days are spent in bed. It sounds wonderful, and for the first few weeks, it is. Yet after a while, turning down the seventh offer to hang out or do something incredible, it sets in — the majority of the summer will be spent in bed, with little to no energy and ultimately doing nothing you had originally planned to do.
It’s hard. It’s hard to turn down offer after offer. It’s hard to accept offers, and then end up having to cancel them because it is hard to get out of bed because you are so awfully tired. It is amazingly hard to spend the entire summer in bed.
Dealing with chronic fatigue is something I have dealt with, to varying degrees, my entire life. It has impeded my life to the extent where I have lost friends because I had to cancel plans on them. One of the only things that has consistently been available for me to do, despite the fatigue, is write. It allows me to work my mind in ways that I ultimately don’t have the chance to do because of the fatigue. That’s why I joined Odyssey. To write.
Ultimately, as juvenile arthritis is a lifelong chronic illness, I will have to cope with the chronic fatigue my entire life as well. There is only so much I will be able to achieve with my life because of it. That being said, I hope that even briefly describing my experiences with chronic fatigue will possibly open up peoples’ perspectives. I encourage everybody to go out and enjoy their ability to do so; I encourage everybody to maybe think about why their friends canceled plans on them, and I encourage everybody to offer a possibly less strenuous activity for said friends. Because, believe me, the last thing they want to do is sit in bed all day.
Energetic dance performance under the spotlight.
Taylor Swift in a purple coat, captivating the crowd on stage.
Taylor Swift shines on stage in a sparkling outfit and boots.
Taylor Swift and Phoebe Bridgers sharing a joyful duet on stage.
