Busy Being Sick

“He doesn’t work, he looks fine, I wonder what he does all day?” That’s a question I’m sure people have often asked or at least thought about me the past few years. I would probably wonder the same if I didn’t know me. Sometimes, I think the people that do know me wonder that as well. Honestly, as time passes, I’ve caught myself thinking that, too – What do I do? What have I been doing? Well, when I’ve thought about it, I’ve been busy being sick. Many people have a hard time understanding that having a chronic illness can actually be a full time job.

What if we just chill?

Recently when I had to, yet again, bail on plans, I had a friend say they’d come over and just chill with me on the couch instead… to which I said I couldn’t. I think they were perplexed and even a little offended that I said no to the offer. While there are times that might work out, the truth of the matter, is that when I cancel on something or say I can’t come out, I’m not just sitting at home laying on the couch watching TV like a grade schooler who stayed home sick for the day. There may be moments that are like that, but when I bail on plans or otherwise say I can’t come out, it’s not exactly that much of a picnic. Generally, wherever I am (bed or the couch), I’m likely struggling to get comfortable, moving from spot to spot. Alternating twisting and turning, sitting and standing, trying to somehow to get relief as pain and spasms shoot through my body.  If that’s not the case, I’m likely fatigued, which is not the same as tired. It literally becomes hard to move, hard to speak, hard to make it to the restroom or even change the channel. I may not have those issues the entire time, or I might, it’s unpredictable. Point is, I’m not exactly good company to others. I also feel pretty awkward with others seeing me like that.

Where does the time go?

While that may be a specific moment when I’ve quickly canceled plans, over the long run I realize I’m pretty busy with being sick, too. My week is made up of plenty of moments like that where I can’t really be all that productive. When I am productive, whether it’s trying to write a piece like this, or loading and unloading a dishwasher, or laundry, or any other task that might seem trivial to most people, it ends up taking a toll on me. Pretty much every small task I accomplish throughout my days requires that I rest and lay down for a bit afterwards. It’s not only frustrating, but it takes up time too. By the end of each day and especially the end of each week, I’m often left wondering “Where did all the time go? What did I get done?” It turns out that much of my time is spent recovering from whatever productive moments I did have.

Being sick is a full time job

The reality for many with chronic illness is that being sick is a full time job. While we may not realize it, a lot of what we do or the way we do things during our day is based around our illness.  That isn’t a sad thing, it’s doesn’t mean we’ve given up. It means that we’re actively fighting against our disease by making changes and adapting to the hand we’ve been given. It’s pretty hard for people to understand just how much of our time our illness takes from us. I’m the sick one and even I have difficulty understanding it. The fact of the matter is, being sick takes up time, while that time may seem unproductive to most people, I prefer to think of it as actively battling my illness. That battle doesn’t mean that I’m free and having a good time though, I’m still busy, just busy being sick.

Thanks for reading!

Devin