One of the hardest things about feeling ill all the time is that I often feel useless. Useless is not a nice word, but there isn’t really another way to say it. I feel guilty for “sitting around” and being in a position that from the outside looks like I’m choosing to not get on with things. By “things” I mean basically anything from helping out around the house to doing my college work or getting a job. All the things that a lot of people my age are doing without problems. I can even understand why someone may look at me and think I’m lazy. I understand how it looks. However, I’m not sitting on the couch or lying in bed all day for the fun of it. In fact, there is really no fun part to it whatsoever. I’m sitting there because I’m unable to get up.
I already feel a lot of guilt about my inability to do lots of things every day. Guilt that I say no to a lot of things because I just can’t. But all this gets worse when other people point it out.
“You have two functioning legs, so of course you can get up!” or
“Have you been sitting there all day??” or
“What have you contributed to this??” or
“I think you’ve rested enough now!”
Those are the kind of comments that hurt the most. Trying to respond and explain to the other person what you’re feeling is almost always impossible. They don’t understand that yes, you can still be in pain after a week of “resting.” That yes, you have a headache “again.”
I find this to be a type of compassion fatigue. For people with long-lasting or chronic illnesses, the compassion from the outside world, including those closest to them, often wanes after a certain period of time. When you’ve reached your limit of being sick; when they feel like they’ve given enough. That’s difficult. Not so much because they stop understanding but because you know that you can’t get up just because they stop understanding. That no matter how much they urge you to get over it after so long, it’s not actually possible. So you will end up disappointing them. Feeling still more useless.
I want to go out and work. I want to not be exhausted or in pain. Nothing would bring me more joy than being independent and not relying on others. I don’t want to put extra work on anybody, I hate feeling like a burden. But that’s the reality some days. I wish people on the outside could understand this, not just for me but for everyone out there trying so hard to get up.