Fatigue Empathy

By | Blog

I just recovered from Covid. Topline: Not fun – avoid if you can.

We had avoided it for almost two and a half years but we both finally caught it, or it caught us –  whatever. I was patient zero in our household and we created a “Covid Commune” with our dear friend Robert who I also managed to infect (though to be fair he chose to eat off my plate at a wedding, but to be really fair I have been eating off his plates for thirty plus years so I guess it was kind of payback, but who was paying back whom as he then got sick? Anyway I greatly digress).

Cassie and I both had many of the typical symptoms – aches, fever, sore throat, and fatigue, oh the fatigue. Thanks to Paxlavid Cassie recovered pretty quickly but for me the fatigue held on tight. It is only after more than a month that I feel like my energy is starting to return.

That got me thinking about the difference between being tired and being fatigued. Maybe that difference is obvious to everyone else but it somehow wasn’t to me. When you are tired you can get some or a lot of sleep and that usually helps. My Covid fatigue on the other hand just wouldn’t go away no matter how much I rested or slept and it was way more than being tired. I felt heavy, like my arms and legs didn’t want to respond. And lethargic – all of the time. I also experienced the fatigue in my whole body and it got more intense throughout the day. It sucked and I am a pretty big baby when it comes to being sick so I complained a lot.

That is until it struck me: Cassie lives like this every day of her life and has since she was diagnosed with Metastatic Breast Cancer and started treatment. But for her it’s even harder because it’s likely never going to go away or get better. In fact, if anything, her fatigue will only get progressively worse. So if you’ve had Covid (or some other type of temporary illness-related fatigue) try to imagine what it would be like if it never went away and you had to live like that indefinitely. I just experienced this sort of real fatigue for the first time and even so it’s still hard for me to imagine life like that. 

I am constantly blown away by Cassie’s courage and perseverance in the face of her MBC and all the adversity it brings. As she sometimes says to me “I make this shit look easy but it’s not.” Now, having experienced just a taste of her life and the fatigue she has to manage every single day, my sense of empathy has increased dramatically. What she and others with MBC are doing is the furthest thing from easy – it’s brutally hard. Over and over again, in the face of crushing fatigue (and knowing it’s never going to get better) she chooses to search for joy and laughter and reject despair. Now to be fair, sometimes she chooses despair for a day or so, but those are the exceptions not the rule. She doesn’t let the fatigue define her life even though living with the fatigue is amongst the heaviest of lifts. 

Cassie has often drawn a distinction for me between feeling tired and feeling “cancer tired.” As much as I have tried to understand what she was saying, it wasn’t clear to me. Until now. Cancer tired = fatigue and fatigue = a hard way to live.