The Limitations of Being Disabled

This piece was originally posted on Substack on November 3, 2024.

My inner world is full of broken promises. I have ideas about what I will do, but reality has other plans. Often, I have entire to-do lists in my head, then the first thing on the list is overwhelming for me. This is partially because I deal with chronic pain and mental health barriers. It’s also because since I was a child, more has been expected of me than was realistic. Every day, I tell myself that I am capable of more than I actually am.

It’s frustrating to realize I can’t do what I set out to do.

The disabled community often utilizes Spoon Theory to explain our limitations to able-bodied and neurotypical people. While it has been helpful in communicating how we don’t have as much energy as others, it’s also worth noting that we don’t have the same number of spoons from day to day.

Before I was disabled, I could generally expect that I’d wake up each morning with the capacity to shower, make breakfast, prepare for a full day of work, etc., unless I woke up sniffly or something.

This is not what it’s like to be disabled.

Chronic illness is literally being varying degrees of sick all the time. Some days we can do more than other days, but we don’t always know where our limit is until we’ve smacked into it. It can look like being physically stuck, forced to sit down in the middle of a task due to pain or exhaustion.

This often happens to me when I’m doing the dishes: I unload the dishwasher, rinse and load up the dirty dishes, and as I’m washing the pots and pans, I suddenly get terrible shooting pain that begins in my lower back and turns to cramping down my legs. If I don’t sit down within a minute or so, the pain builds until it’s unbearable.

Usually when I’m explaining this to an able-bodied person, this is the part where the unsolicited advice begins: have I seen a doctor? What about a physical therapist? Am I on medications for the pain? Do I exercise and stretch? Have I tried yoga?

The answer to every one of these questions is yes.

Nonetheless, I have chronic pain that is difficult to manage.

It wasn’t always like this. I used to be able to work on my feet for full shifts. I used to be able to keep busy throughout the day. I was not born with a chronic illness, it came about within the past several years and was officially diagnosed in 2020. Diagnosis is not instant. Physical therapy and yoga have been helpful, but even those wouldn’t be possible most of the time without medication for the pain. It doesn’t make the pain go away altogether, either. The meds just bring the pain down to a more manageable level…mostly.

Anyway, I say all this to explain that my mind is often busy with unrealistic plans. I think about what I want to do, but I am unable to follow through, despite the best intentions and willingness. There are some things that help me get around the mental barriers, like psychiatric medication and mindset shifts. Overall, however, the main barrier is a physical one: my body does not cooperate.

The frustration of being disabled is that I seldom have the capacity for a basic set of tasks. What I used to be able to accomplish in one day, I’m now lucky to get done in a week. I can’t do what I expect myself to do. I am learning how to give myself compassion and adjust my expectations and goals accordingly.

It is also important to explain this because it helps people who are striving to understand. If you are one of those people, I appreciate you.