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.
For years I’ve been in a battle with myself. My mind fighting my body, my body fighting my mind and me as a person being attacked by them both. My goal has always been to “win”. Winning meant that I would go out and do what everyone else was doing no matter how bad it made me feel. Winning meant that neither my anxieties nor my physical pain would stop me from accomplishing what was expected of me that day.
In the last three years the battle between myself, my mind and my body has exhausted and frustrated me beyond words. It seems that I have fought hard and still lost many times. My body has stopped me from completing trips that I had dreamed of for months beforehand (pre-covid times). It made my college start almost unbearable and since led me to be trapped in remote learning even after my classmates returned to normal classes last school year. It has stopped me from getting a job to be able to save up like other young people to eventually be able to leave home and become independent. The jobs I have attempted –on the days where I tried to win– end in more upset just weeks or days later when I am forced to quit. Taking away the opportunity and at the same time making me look like a quitter. Something I strive so incredibly hard not to be.
Most recently it has taken away the perfect internship that I applied to and got accepted into a few months ago. Months that came before the most recent COVID surge, before my anxieties and my health concerns started mounting at a speed I could barely follow. During those months I held onto the possibility of starting this new journey with excitement but also growing sadness. As the weeks went on I began to see that my body was winning and that it was going to try to stop me.
This fight mentality is hard to live with. Fighting connotes anger and aggression, neither of which I have. So being angry at myself day after day became exhausting quickly. As I write this it is just a couple of days before I am due to start at the new workplace. I have still not given up enough to write to tell them that I am unable to come. Somewhere in me I always think maybe I can keep fighting just a little longer and then everything will turn around and I will win this one. The thought of writing out that email pulling out of yet another commitment makes me want to throw up. It fills me with guilt and shame and frustration all directed towards my body and my mind. When I inevitably send that email I will cry thinking of how I allowed my weak mind and body defeat me again. To take away another thing that I had wholeheartedly planned and wanted to do.
I may have had all the world’s best intentions, but the people on the other side of that email don’t know me. They have never met me. This may seem like a good thing- the email of the quitter will essentially be anonymous. But they will also think badly of me for being that person who pulls out of something at the very last minute. They will never know the battle that raged between every part of me for weeks leading up to the defeat in the form of that email.
No matter how hard I try to take advice like “be kind to yourself” and “you’re doing your best, that’s all you can do” to heart, I still feel ashamed. Ashamed of every time I have had to disappoint someone who was relying on me. Ashamed that other people my age are living and working, creating a life that I don’t even dare think about because it seems so far out of my reach.
I’m not at the point yet where I can be at peace with letting my illness win. But I know I need to get there. When you fight yourself you will always lose.