Guilt. It’s a feeling I’ve had to process a lot lately. It’s something we all deal with from time to time. Maybe it’s due to a forgotten meeting, the dirty dishes piled up in the sink, or stumbling to bed without a kiss goodnight. Things happen, we are human. The guilt caused by being sick reaches an entirely new level of emotion, in a completely different ballpark. This is guilt without something to fix or to control.
The guilt for me increased more and more when I stopped being able to live up to my responsibilities. It’s not that people don’t understand. I know that the people in my life get that I’m sick. What makes me feel guilty is that I ask for — or more realistically, just receive — this understanding from people time after time. It’s not once in a while or an isolated incident — it’s several times a year, for weeks at a time.
My partner understood when a past bout of sickness caused me to cancel plans for our anniversary and his birthday. We were supposed to go on a lovely weekend trip, something we had been looking forward to for a while. Our lives have been full of paperwork, major life planning, job hunting, and other nitty-gritty adult life tasks. We needed a short break. Instead, we spent the weekend in separate beds, as my poor partner tried to get some sleep between middle-of-the-night IV changes and coughing fits. Much of my time was spent in a zombie-like gaze, incapable of any meaningful conversation or romantic cuddling. “In sickness and in health” it goes, but “in health” is so much easier.
My employers had to acknowledge and understand yet again after I failed to complete my work. I am lucky to work for people who are incredibly kind and understanding, but it doesn’t negate the fact that I am behind in my work. People are counting on me.
My family and friends understand when they have to change plans last-minute, assuming they even get a plan out of me in the first place. My poor service dog, who needs constant upkeep in his training and loves to play, had to be understanding. Heck, even the general public has to be understanding when I’m coughing up a storm or stopped in an aisle at a store.
It’s not that I think anyone blames me, although I can’t say the thought has never crossed my mind. It’s the constant feeling of asking too much and not being able to do anything about it. The phrase goes: “It takes a village.” I would be lost without all of the help and understanding I receive from friends and family, and even strangers. It doesn’t mean that I don’t wish things were different.
I think there will always be a piece of me that feels guilty for not being physically capable of living up to my own expectations. The guilt of being sick isn’t always bad, though. I’d say it keeps me pretty grounded and pushes me to do as much as possible before throwing in the towel. But, man, does it suck.
***
This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted on Mondays. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.
