When I say I can’t do something, sometimes it means just that—I am literally not physically capable of doing that thing, no matter how much I want to or how hard I try. Sometimes it means that while I could possibly force myself through the ordeal, with the help of stimulants and painkillers but still exhausted and in extreme pain, after days of bed rest to prepare for the exertion, the effect that will have on me afterwards is not worth it.
This is the effect it will have on me afterwards. I will be profoundly exhausted to the point where sitting up, walking and being in an environment other than a dark, quiet room are extremely difficult, and preparing food for myself, washing my hair and body, and getting dressed are most likely impossible. The sensation of hearing any noise above a quiet whisper or looking at light brighter than what creeps in through the crack in the curtains is physically painful. This makes any form of communication, in person or at a distance—even talking on the phone or using a computer—uncomfortable at best and impossible at worst.
I will be in so much pain that I cannot sleep for more than a couple of hours a night. That, combined with the extreme exhaustion, means that I’m running on adrenaline and very little else. This perpetual state of fight-or-flight, the feeling you get when you’re leaning back in a chair and it tips into instability, triggers constant, intense anxiety. Because the anxiety is not about anything, it cannot be talked through or effectively managed with tools that are used to reduce anxiety caused by emotional factors. It is just there. The longer it’s there, the more frequent the panic attacks and dissociative episodes become until pretty much every waking moment is one or the other, or both.
What I desperately need to do in this situation is sleep. A lot. Deep, restful, restorative sleep. This does not happen for all the reasons explained above. The longer it does not happen for, the worse everything gets until I reach a point where I can’t sleep, can’t eat, have no idea what’s going on and am absolutely terrified, all while being so exhausted I have to concentrate on breathing and in so much pain that there is no respite from it no matter what I do.
Life does not stop because of this. Things do not stop needing to be done. The world does not become quiet, dark and undemanding for me. Even when I am able to say no to everything and take the time I need to begin to recover from whatever put me in this state to start with, it does not improve in a matter of days. It takes weeks. Sometimes it takes longer. During that time, I question myself. I feel lazy, guilty, worthless, useless. I most likely have to say no to things while struggling to explain why, managing only “I can’t” or “I’d be a mess afterwards” and people generally don’t get what that means.
I have spent more than a decade with no choice but to knowingly do this to myself because I had to work in jobs that required it. Financially, I had no other option. None of this is because I haven’t tried hard enough to get better or have lacked a suitably positive attitude or don’t know how to look after myself. Trying hard and getting through things on attitude alone are all that has kept me going. I know exactly how to look after myself—the problem has been that my life has not allowed for it, even at the best of times.
Now I am lucky enough, and have sacrificed enough, to be in a position where I can say, “No, I can’t”. When I do this, it is not laziness or negativity or a lack of determination. It is a conscious choice not to live in hell. It is not avoidance or giving in to a fear of what might happen. It is self-preservation due to being acutely aware of exactly what will happen, based on what has happened, what does happen.
So when I say, “Things haven’t been great for the last little while”, this is what I’m referring to. When things haven’t “been great”, I will still occasionally have a good day when I can do a little more than I’ve been able to do on the other days, but these good days are not predictable and if I push myself too hard on not-a-good-day, I hit rock bottom again. This makes it incredibly difficult to plan things because while I might wake up one day and be able to do a little more, I cannot know in advance when those days are going to be.
For more than ten years, every decision I made was based on one question—”Can I do this?”. Not “Can I do this safely and without drastic negative consequences?”, but “Can I force myself through this somehow, no matter what happens?”. How I felt wasn’t even a factor. This became my natural state of being to the point where I forgot how to consider how I felt. Whether or not I wanted to do something didn’t even come into play. I forgot not just how to consider that, but what it meant.
I am gradually learning to think about how I feel and what I want again, to remember what those words and thought processes mean, and that they are allowed to factor in to decision making. I am slowly getting to grips with saying no, with remembering that I am not lazy or worthless if I can’t do something. I am getting better at shutting down conversations where people try to tell me, often in subtle ways, that this is somehow my fault, my doing or my choice.
I wish I was better at explaining all this, that I could do it concisely with one short sentence instead of fifteen hundred words. Or maybe I wish I was better at remembering that I don’t have to explain it, but I’m not there yet. I still live in a world that requires justifications, that says, “It could be worse”, as if only the one person on the planet who has it worse than anyone else is ever allowed to be anything other than fine. I still live in a world where the government, the mainstream media and everyone who listens to those things believes me, and people like me, to be nothing more than a waste of space and a drain on resources. It is hard not to feel anger about that, but anger requires a lot of energy and I have better things to do.
Most of the time, I am invisible because I exist behind closed doors. People do not see me unless I’m physically able to be in human company. On those days, I do not look sick. I am an expert at the casual rest stop, the undetected lean-against, the cover-up of under-eye circles and too-pale skin and the effects of my own immune system turning against my body, and the disguise of shaking hands and blurred vision. My autopilot, the detached, robotic thing that smiles through my face and says “I’m fine, honestly”, is finely tuned. For someone who prioritises honesty in almost every aspect of existence, I am an excellent liar when it comes to answering, “How are you?”. I can even manipulate myself into believing the things I tell other people. I know I do it and I do it anyway. But I shouldn’t. And I shouldn’t have to.
I’m not even sure why I’m writing this other than I need to get it out of my head. Maybe someone else who lives in a similar situation will see this and feel less alone. Maybe someone who doesn’t believe that a person can seem alright on the surface and be invisibly falling apart will see this and realise that their assumptions are flawed. Maybe I’ll read it tomorrow and hate myself for putting something so raw out into the world where people can judge me harshly and continue to believe that I’m weak, lazy and unmotivated, even though that couldn’t be further from the truth.
I don’t know. I just know that it needs to be said, so I’m saying it. I’ve said it. It is not for validation or sympathy or sad-face emoji responses. It is at least partly because this can no longer be the one thing I am willing to lie about. I am left wondering why the truth of this is such an uncomfortable, ill-fitting garment but also knowing that I will continue to wear it.