When I was a kid, I’d usually have to sleep an hour or two after having an IBS attack—it would drain me completely. I’d be tired for the rest of the day. But the next day, I’d be back on my feet. Now that I’m an adult, things are a little different. It’s almost like aging plus having a chronic condition for 20+ years takes a toll on your body or something. Who knew?
Exhaustion is a big factor with IBS (and, really, with any chronic illness). You may find it particularly frustrating if, like me, your natural tendency is to base your worth on “doing” things—for me, that means writing, creating art, editing, doing graphic design, or anything that qualifies as “work” in which I have something to show at the end of it. It’s taken me a while to accept the fact that I have value even when I do nothing, when I produce nothing. I still struggle to accept that on a daily basis. This is partly the fault of a society that has pounded the “work ethic” ideal into everyone’s minds. Our culture says that if you’re not working, if you’re not doing, if you’re not busy 24/7 then you’re doing it wrong! Capitalist societies value able-bodied people that fit into the eight hour day, five day work or school schedule. If you can’t do that, you’re an outsider or a charity case.
I still remember watching a classmate stand up and go to the front of the class at the end of each middle school year to receive the “perfect attendance” award, and feeling like I had failed. I still remember viewing a syllabus in college that said attendance was a significant part of our grade, and feeling a sinking feeling in my stomach, knowing I would have to work that much harder than everyone else at the other assignments to keep my grade passable. Due to my condition, I would never have perfect attendance. I would always miss classes due to flare ups and fatigue.
It was only until later in life that I realized that attendance requirements and awards are ableist. They don’t factor in the reality of disabilities and chronic conditions. They don’t allow for the fact that some people can’t have perfect attendance. They don’t consider that they’re awarding someone for not being disabled. Hooray for you—you’re not chronically ill. Good job.
The pressure to keep up is tough. Taking time to rest and knowing your own limits is key to your survival. I’ve also had to acknowledge that I can’t do the same things that other people can—perhaps especially difficult for someone as competitive and perfectionistic as I am. I constantly remind myself, “It’s okay to rest.”
Lately, my fatigue has reached the point where showering exhausts me. Seriously. After taking a shower, I’m out of breath and I have to sit down for the rest of the day. Sometimes I skip showers for days because I simply don’t have the energy. I hate the feeling of greasy hair, but what can you do? Thankfully, I work from home and don’t have to worry about other people’s disapproval—only my husband sees me, and he’s wonderfully understanding about personal hygiene taking a backseat when I just can’t stand up for that long.
You may find yourself trying to explain your exhaustion to a healthy person and getting the response, “Yeah, I’m tired, too.” This is annoying. Try not to throw something at them (it’s not worth the energy). I’m sometimes tempted to respond, “Oh? Were you also up until 6 am with chronic pain, like you have been for the past week? Has your body also been ravaged for years by an incurable condition that saps you of essential nutrients, makes you afraid to eat, wrecks your sleep, and constantly has you running to the toilet in pain?”
This isn’t to say that other people’s exhaustion is invalid. We don’t need to compare our pain and difficulties and say ours is worse, therefore they don’t have a right to complain about anything. But having someone respond this way, with “I’m tired, too,” is unfair, because it dismisses us. The subtext of their message is, “Yeah, we all get tired. Deal with it,” when your fatigue is not just a result of regular life stressors or bad time management. Your exhaustion and chronic fatigue is a different beast entirely, and it’s a difficult thing for healthy people to comprehend. You can’t just push through it and expect to feel fine the next day or catch up on rest later. You will never be able to catch up. Your body is on a merry-go-round of pain, and you rest whenever you can get it.
Of course, with IBS, there’s an additional “it’s socially inappropriate to talk about” factor. It’s challenging to explain to someone, particularly if you’re not that close, that a big part of your exhaustion is due to running to the bathroom every hour to have painful diarrhea or, if you have IBS-C, that you’re constantly constipated. If someone wants an explanation of why you’re so tired, why you’re late, why you’re missing class or a date or an appointment, you might be hesitant to give them the details. That’s okay. You don’t owe them the details. I wish that pooping was a more socially acceptable topic so that people wouldn’t look disgusted when you mention it, but we’re not there yet. If you do find people you can share all the gory details with and they don’t bat an eye and still want to be friends, keep those gems in your life! They’re the best ones.
The biggest barrier to dealing with my exhaustion has been acceptance. Accepting that I’m chronically ill. Accepting that I’m differently abled. Accepting that I can’t do it all. Accepting rest. And, of course, rejecting society’s notion that I have to be “doing” to be valuable.
So know this: you are valuable. You are loved. You matter. Regardless of what you do, what you accomplish, or what other people say, you are worthy. Listen to your body. Take rest when you need it. Tomorrow is another day.