I hate making banana bread. And it isn’t because I hate bananas or banana bread or even baking. It’s because somehow, no matter what I do or how I plan the bananas and I are never ready at the same time.

This has been a theme throughout my life, especially as an adult as my inflammatory issues have taken a toll on my energy levels. If I have the energy, I don’t have the inspiration. If I have the inspiration, I don’t have the energy to work on my creative projects.

If you’ve heard of spoon theory, should sound familiar to you. In short, spoon theory is the idea that we all have a certain allotment of energy (spoons), and certain activities cost more spoons that others. The problem with being neurodivergent and chronically ill is that there is no such thing as a work-life balance. There isn’t a single activity that doesn’t cost me spoons, whether they’re physical or mental.

Spending time with people outside my partner, costs me even if I greatly enjoy our time together. Washing my hair will ultimately feel better, but it will cost me energy to do, which means I end up putting it off until I have to because I have work or I put it off so long that it starts to bother me from a sensory perspective.

What people don’t seem to grasp with spoon theory and autism is that things cost you spoons that don’t always make sense to others or they cost a disproportionate amount. Going to the grocery store isn’t physically taxing for me, but the lights, the noise, trying not to get clipped in the parking lot, the people, remembering to get everything on my list (I need a list because I have gone totally blank at the store), acting “normal” at the checkout, etc. is a lot that most neurotypical people take for granted. For me, this mental stress converts into physical stress, so once I get home from the grocery store and unpack everything, I wind up in a heap of fatigue for a few hours decompressing. It’s the same thing with my job(s) and why I avoid going to conferences or conventions. Even if covid wasn’t a thing, they still suck the life out of me and require a multi-day recovery period. Part of the reason I diligently mask and try to reduce my chances of catching covid is because if I got long-covid/a post viral illness, I would have even less spoons to go around, and I can’t imagine limiting my life more.

I’ve tried to organize my life in such a way that I’m expending as few extra spoons as I possibly can, so I can still do my writing and creative stuff and not be an overstimulated misery to deal with. It sucks though because I don’t think most people who casually know me would think of me as disabled or even autistic, and people with invisible disabilities or neurodivergence will always be held to impossible standards. They might be attainable for a time, but they aren’t something most of us can manage long-term without burning ourselves out. There is no way for me to have a standard neurotypical work-life balance without losing something, whether it be hobbies, socializing, chores, or my actual job. Something will always be falling to the wayside, and in neurotypical society’s eyes, I will always be failing.

For people where most of these things are near effortless or the effort is only required in short bursts, they will probably never understand how much I struggle and how little of a safety net there is. There are many reasons I support Universal Basic Income (UBI), but one of the main reasons is for when people who are ND or disabled burn out or need time to recover from a flare, they won’t be left destitute or having to keep working at seemingly 100% while actively hurting themselves. We live in a society that is very much all or nothing. If you aren’t disabled enough, you get zero benefits/support. If you are able bodied enough, there is no safety net. The best way to support your neurodivergent or chronically ill friends is to help them out when they need it (after asking, of course) and pressuring your government and politicians to expand things that actually help our society and those who need that extra help or safety net. Being able bodied is a temporary state for most people. Shaping our society to support rather than penalize a state most of us will end up in will benefit everyone.