Living as an autistic person with chronic illness includes a level of exhaustion that’s hard to put into words.
It’s not only physical fatigue, though that’s a big part of it — it’s a deep, all-encompassing kind of tired that touches every part of life.
On top of exhaustion, there’s guilt —
- guilt for feeling tired
- guilt for not doing enough
- guilt for not living up to the standards society sets for productivity and “pushing through”
Feeling this way is exhausting, and that’s before you even get into the emotional labor of managing it all or how each of my conditions deplete my energy.
Spoons, forks & knives
- Spoons represent internal resources.
- Forks represent external stressors.
- Knives represent consequences.
The spoon theory
Lupus patient advocate Christine Miserandino created the spoon theory metaphor in 2003 in a restaurant, to illustrate energy budgeting with chronic illness to her friend.
Each day, people with chronic illnesses start with a limited number of spoons. If they didn’t sleep well or overexerted themselves the day before, they wake up with even less. The wake-up amount of spoons is never the same.
They ration their spoons to make it through the day and decide what to spend their spoons on. Every task and action uses up one or multiple spoons.
The fork theory
The fork theory is a metaphor for to describe how overwhelming small tasks or unexpected events can be.
Everyone has a fork limit.

Every challenge or stressor is a fork poking into your body. Anything that makes you feel worse — whether that’s hunger, relationship stress, financial stress, or even a new diagnosis — is another fork.
When you’ve reached your limit, you can’t handle anymore forks.
Stick a fork in me. I’m done.
Instead, you need time to rest and recover.
The knife hypothesis
With the Knife Hypothesis, a knife may be used in place of a spoon.
Using a knife means using more energy than you have. Whatever knives you use today, you’ll have to compensate with spoons tomorrow.
Tomorrow, you can use knives instead, but the currency doubles. Or triples.
Yesterday, I raked two 30 gallon bags’ worth of leaves. I definitely pushed myself beyond the first one. I was so exhausted I couldn’t anything the rest of the day. My allergies acted up, too, because the next door neighbors have pine trees.
I’ve been in pain for several weeks already, even with light stretches to increase mobility. Today, I wasn’t able to do anything, either. I’ve spent a lot of time in bed lately resting because I used knives in place spoons for far too long instead of listening to my body.
Healthy people can push themselves and not feel too much pain. High-masking people also may be able to push themselves beyond their limits.
I used to do that, so I understand…I also recognize the complete lack of empathy that version of me had for people in my current situation back then. I didn’t get it.
It’s not something I can explain to people once and not have to explain again. It’s something I need to repeat myself about, because most people don’t understand.
Pushing yourself too hard with a “knife” leads to burnout, more exhaustion, or other more negative, risky consequences.
Using knives instead of spoons isn’t sustainable or healthy long-term.
How autism contributes to exhaustion
Autistic people process more information than non-autistic people. This makes us more susceptible to mental fatigue, especially when caused by masking, interpreting social cues or navigating unpredictable situations.
Sensory overload from lighting, sounds, heat/cold — anything — can quickly drain energy, too.
Simply existing is exhausting when you’re pushing yourself to meet the expectations society places on non-autistic people.
The exhaustion autistic people experience is called autistic fatigue. It’s when the processes, routines or systems an autistic person lives by begins to stop working.
After autistic fatigue comes autistic burnout.
The emotional labor of energy budgeting
Energy budgeting is a full-time job in itself.
Every decision becomes a mental calculation: “If I do this, will I have energy for that?”
It’s not only about today, but tomorrow and the day after that. What I do today will affect my energy for the next week, month or even several months.
Can I afford to spend my energy on this outing, or will it leave me bedridden for days?
This constant negotiation is mentally and emotionally draining. It’s a relentless cycle of prioritizing, sacrificing and hoping I made the right call.
This isn’t factoring in factors like sensory overload, either, which require spoons even when I have accommodations like headphones to help me deal.
Everything requires spoons — communicating, speaking aloud, brushing my teeth, showering, feeding my cat, changing my sheets, laundry, dishes, preparing food, eating, staying hydrated…the list goes on.
Grieving my life, body and consequences
Coming to terms with these limitations involves grief —
- grief for the life I imagined for myself
- grief for the things I used to be able to do
- grief for the person I thought I’d be
- grief for the relationships lost because people didn’t understand
It’s a slow, painful process of letting go and learning to accept this new reality.
And just when I think I’ve made peace with it, something happens — a flare-up, an unexpected crash, a missed opportunity — and the grief comes rushing back.
With grief comes guilt, too.
Sometimes, energy budgeting means canceling last minute for survival and dealing with the consequences of the other person involved with the plans not understanding.
I feel guilty for not being able to do things I wanted to do, being unable to follow through with plans I made to other people, and even being unable to keep up with other people.
I really struggle to watch all my nieces at once because of the energy and emotional labor involved; watching one at a time goes much better for me. From the outside looking in, I fear this gives the impression that I’m not truly capable of spending time with any of them.
I feel guilty for being unable to push my body beyond its limits when I see other people pushing theirs. I grieve honoring my limits.
I mourn the life I could’ve had had I not had “weak” limits or a limited number of spoons.
This is the chronic illness cycle of grief. It’s depressing and wears me down, but I’m not depressed. The feeling will pass…eventually.
Consequences aren’t always good/bad, or positive/negative. I’ve learned many consequences are neutral, balanced on a scale.
This is the reality of being chronically ill, the one in my life I’ve come to accept.
A healthy person might prepare from scratch a nutritious homemade dinner that’s ready in half an hour to two, serve dinner, put away leftovers, clean up after, and still have energy for their hobbies.
Sometimes, they have kids who help out with the chores — totally different metaphor with totally different privilege.
If I were to attempt the same meal, every task would be a knife…and probably also a fork. Some knives might also add forks in the moment.
The meal may be tasty, but my energy will have been depleted…some meals are worth it; it depends. Most often, though, it’s so-so. The outcome doesn’t outweigh the energy put forth; it’s neutral.
And that energy removes spoons or adds knives that affect how I spend my future energy.
And the worst part is that I don’t always know the effects of certain tasks until way after.
I didn’t realize how much pain I’d be in after raking the leaves, how foggy-headed it’d leave me.
Everything I spent my energy on has consequences. Even the positive consequences have negative or neutral consequences. There are always consequences to everything.
I can never “just” do anything. Nothing is ever “just a simple” anything.
Self-acceptance is the only way through
The hard truth is that people who don’t live this life aren’t going to fully understand.
Some will try to empathize, but they won’t understand on the same level unless they’re impacted by chronic illness themselves.
That’s why self-acceptance is so important. It’s the only way to move forward. Accepting your limitations doesn’t mean giving up; it means learning to live within your capacity, and honoring what your body and mind need.
It means unmasking — letting go of the need to pretend you’re okay when you’re not — and showing up as your real self, exhaustion and all.
Why sharing matters
Unmasking my autism means unmasking this part of me, too — the less “amazing” parts.
Posting about the exhaustion, grief, guilt and my self-acceptance is cathartic for me — and a way to reach other people living this reality, too.
It’s a way for me to say, “I see you. You’re not alone,” because knowing you’re not the only one carrying this helps make it a little lighter.
Other posts about unmasking my autism:
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