As the world unravels around us and the need to be kind and helpful increases every day, the feeling you get of being a chronically ill, useless blob increases with it.
Some of the top things that upset me and make me feel most useless:
- Not being able to go to protests
- Not being able to go and help people out for fear that I would get in the way
- Not being able to go help out because my body has no stamina and fainting after standing for 10 minutes in front of lots of people who have plenty to deal with already would probably not be very helpful to anyone
- Not being able to invite people to stay with me when they need a place because staying in my home would make them feel in some way like they need to assume a caregiving role
- The feeling that haunts you forever that you can not adequately take care of others because you are not able to take care of yourself
Maybe all these things are in my head, but aspects of all of them are definitely real. They may also seem like they’re coming from a selfish place or from a land of excuses because I am scared of getting out there or simply lazy. Lots of people may think that. And if you think that then so be it. All I can say is that neither of those is true. In fact, these things keep me awake at night. I try to brainstorm other ways in which I can be of help to all the people in our world who need it so badly. Of course there are ways. Via the wonderful internet and virtual fundraisers etc. And although these tools can be powerful in their own right, they never seem adequate enough when I’m judging myself.
I don’t have a solution to the Useless Blob problem yet. I have previously found out that denying that there is anything wrong with me in order to go out and push myself to do something useful always backfires and ends up in an either dangerous or embarrassing (or both) situation. The logical conclusion is then that I am being more helpful by hiding away and not getting in anyone’s way. This is also leads to intense internalised ableism…
Where is the balance? I don’t know. Am I thinking of people who suffer every day and night and try to figure out ways that my weak and useless body can help them? Yes. Everyone can do something, and I do what I can with what I’ve got. Even if what I’ve got is the body of a Useless Blob.
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.