#CripStories: Energy and Fatigue
Teona is a 23-year-old writer and college student majoring in Library Sciences. They are Autistic and ADHD, and became disabled in 2019 after the development of Myalgic Encephalomyelitis and hyper-mobile Ehlers-Danlos Syndrome.
Image Description: A photo of Teona, smiling at the camera. They have clear glasses on with a black rim, a black sweater, and a necklace with a white crystal.
I feel like when you’re chronically ill and/or disabled, energy as a concept and topic of conversation is somewhat universal in some factor. We may not all share the same exact experiences with it, but we can relate to how huge of a factor it is in our daily lives.
Being disabled for me means that I don’t have the same 24 hours that non-disabled people seem to have.
I often watch the routines of my loved ones, seeing the capacity in which they have to include so many things in their daily routines.
The expectation of human productivity and worth is based on our ability to not only get in bed at reasonable times, but to shower, cook two or three whole meals, clean, do school and/or homework, entertain a hobby, work out and then get in bed at a reasonable time. For those who can’t follow this routine, it causes us to feel less than and disheartened. I feel so disappointed in myself for not being able to do things that make me feel like a productive member of society.
For me, my day consists of waking up and waiting on my body to start waking up too. If I’m lucky, I can get out of bed within the hour that I’ve woken up but if not, I’m in bed until an hour before my work shift starts when I drag myself to try and do all the things I was supposed to spread out in the morning, in that short period of time. I have to make a choice: wash the dishes you’ve had in the sink for a week or stand in the kitchen and make breakfast.
If I do one, the other doesn’t get done and sometimes I can’t do either.
My hands have begun to just ache horrible for days at a time and legs can’t handle standing for very long because doing so has fatigue kicking down my door almost immediately. Showering is questionable, even with a shower chair now. By the time my lunch break comes around, I don’t have the spoons to make lunch so if no leftovers are left, I’m stuck ordering food because my mental and physical energy has already depleted.
When you add in my ME (Myalgic Encephalomyelitis), I’m stuck laying down, unable to fight against the gravity of fatigue to stand or sit up because doing so feels like fighting a battle I was never meant to win. The fatigue feels like I’m stuck in a pit of tar, unable to move because shifting around feels like I have bricks chained to every limb. When my migraines strike, I tend to deal with intense light sensitivity and stepping out into my living room / kitchen feels like literal death so even if I’m able to get out of bed, I have to get back in because the dizziness and light sensitivity paired with the pain makes me even more of a fall risk than my EDS (Ehlers-Danlos Syndrome) already does.
Something I have to remember is that life happens and even non-disabled people aren’t always able to be “productive.”
The entire concept of “productivity” is a product of capitalism anyway that doesn’t include the abilities of disabled people without pressuring us to assimilate and mimic non-disabled people. The point should be to do what you can and that looks different for all of us. My “do what I can” looks like doing one or two things a day and resting for most of it so I don’t overexert myself or exacerbate my pain. I’m disabled. I am physically unable to do housework, symptom management, my full-time job, this writing thing and make sure I’m okay mentally and emotionally.
We are worthy regardless of what we can do and can’t do.
I see people say things like “there’s no excuse why you can’t do ____” and I internalize it so much, but the reality is that my disability is my excuse (and it's not an excuse, its reality). I can’t cook three healthy meals a day and take care of myself, my house and my cats. I can’t live a life that mimics the “a day in my life” videos we see on social media that though we know are likely advertisements, we also know there are people who exist that have lives that look similar.
When ableds say things like that, they are either actively excluding disabled people from the narrative (which is ableist), or they believe that disabled people are just “giving in” and that we can do everything non-disabled people can, but we just don’t put our minds to it. I bounce between which idea is worse or more ableist, but both are incredibly wrong.
The hard reality is that we’re disabled.
This means we have conditions, injuries, illness, etc. that cause us to be unable to do daily tasks that non-disabled people can do. This includes holding down a full-time job, doing house choices, being a full-time student, a full-time parent, etc. This doesn’t reflect on our worth as a person regardless of how much capitalism tries to enforce the idea that it does. Just because we can’t do something doesn’t mean that we have to meet some quota of productivity or that we’re less important. Our struggles matter which means it's important to be kind to ourselves when we can’t do things. We shouldn’t hold ourselves to standards put in place by non-disabled people because they aren’t disabled. They don’t get to tell disabled people what we “should” be doing.
No one can tell you what you should be able to do and shouldn’t because they don’t live in your body or share your exact experiences. Even though we see people able to do so many things in a day, it doesn’t mean that it's an accurate representation of how our days should go. Just doing what you’re able to do is enough, and if that includes absolutely nothing, that doesn’t make you lazy.