‘Tired’ Is an Understatement for People with Chronic Illness

When someone with a chronic illness says they are tired, they don’t simply mean, “Oh, I could probably do with a nap.” They mean that their body is beyond exhausted, that they can’t keep their eyes open, and that doing simple daily tasks is just too much.

Recently, I had a harsh reminder of what it means to be “tired” with a chronic illness and realized the luck I’ve had on good days when I can go about things relatively normally.

When I left isolation after two weeks of chemotherapy, I knew I would be a bit weak because I hadn’t exercised much and had slept during most of the hospitalization. I didn’t realize the extent of my body’s strain and how physically and emotionally drained I would be. This experience reminded me of what true exhaustion is and the importance of having a support system that is there for me no matter what happens.

Chronic illness means that a body is pushed to its limits daily. I now realize how much I took “normal” days for granted before my “sick life” began. I’ve learned that I need frequent rests just to function and that I must strictly prioritize life activities.

Online shopping helps save spoons. A friend’s birthday party might be a priority, but I may need to cancel at the last minute, depending on my body’s condition that day. Cooking dinner and washing the dishes … Ha, I wish I could do something as mundane as this, but by the end of the day, I am lucky if I can get off the couch without assistance.

Recently, I experienced a very low day. My body just did not want to cooperate. There are two small steps between my bedroom and the bathroom, and I had to lean against the wall to help me get up and down them. I was breathing heavily like I’d just run a marathon and sweating by the time I got back into bed. It was utterly ridiculous.

I later tried to have a bath but didn’t even have the strength to lift my arms and get my pajamas off. Luckily, my sister was staying at my place to help take care of me, so she helped me get undressed after running my bath and then offered support as I climbed into the tub. I didn’t have the strength to hold myself up for a shower, so I was extremely grateful to have a bath that I could relax in. My sister then had to help wash me, as the exertion of climbing into the bath had depleted my spoons for the day. It was only 9 a.m.

Getting out of the bath was a joke, as I didn’t even have the strength to lift my body upward from the sitting position. We drained the bath water so Kate could climb into the tub with me. She lifted me a little so I could sit on the edge of the bath and catch my breath. So much exercise for one day!

We then managed to get me into the standing position, and she draped a towel around my shoulders. I couldn’t lift my legs over the edge of the bath, so I leaned on her as she physically lifted my legs up and out one at a time. She then dried and dressed me in my most comfortable clothing and helped me back into bed so I could rest.

How could I not manage to do any of this on my own? I am 30 and still need assistance in doing the absolute basics to get me through the day. The extreme fatigue continued that way for some time. Today, I realize how lucky I am to be able to make it through the day without assistance.

Next time you hear someone with a chronic illness say they are tired, know that it is so much more than what most people can understand. It is soul-shattering exhaustion that affects every facet of life. I don’t want to miss out on events or life in general, but I need to save energy just to live.

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