The Dilemma of Working With Debilitating Chronic Illness

I am tired of living in a system that perpetuates an impossible situation. We live in a system that is capitalist no matter where you live. It is a system that inherently values people based on their ability to create profit and worth.

It is a system that is inherently ableist.

It is a system that believes that if you cannot be productive in the correct way, your life, your contributions are valueless.

It is a system that instills identity in the form of productivity — after all, “what do you do?” is often the first thing we ask people when we meet them. Our work is often our identity as much as anything else.

It is a system that perpetuates harm we see every day with both disabled and abled people. We fear losing our identity, our moniker of productivity. And more than that, we are punished if we do.

I am someone who deals with often disabling pain, fatigue and other symptoms. But I cannot stop working though I want to. Without work, I would not have health insurance. Without work, I would place a financial burden on my family who can’t afford it. Without work, I would not be able to support my own independence and identity within the system that we live in.

I don’t want to work. I want to have the time — the absolutely desperate and critical time — I need to heal. Time I need to relearn how to function, survive and thrive.

But I can’t afford to heal in any way if I don’t have health insurance. I can’t afford to heal if I don’t have an identity because without an identity, no one will see you. And since identity is productivity, I can’t afford to lose my productivity.

I know I need to stop working. I know this because panic attacks and breakdowns shouldn’t be scheduled into my daily calendar like other people put in coffee breaks. I know I need to stop working because I can feel myself slipping farther and farther to the point of “you will no longer be independent without a carer to support you.”

I know I need to stop. But I can’t. Because of this awful dilemma we’re forced into by living in this society and system. Either I work and get worse until I can’t work or I stop working and can’t afford the help I need to get better. There is no winning. There is no solution that can get me out of the cycle this system has created.

This past year, we have seen incredible bounds in understanding what we can do as a society to support one another. But it’s also been made clear that we haven’t learned those lessons yet as people pretend that a deadly pandemic is over when it isn’t. We’ve seen with huge social movements like BLM that we can address social and systematic change if we scream loud enough, even if progress is slow and measured by the messed up system. But, despite the fact that most people will become disabled or know someone who is disabled at some point in their lives, disabled and chronically ill voices are silenced. No matter how much we share our struggles and our identities, we do not succeed because we are what people and society fear.

We are people outside the laws and norms of who you should be. We’re more than who we should be. We’re greater. But we’re forced into a system that loves to categorize, though we don’t fit into any box. It’s time for everyone to understand that everyone is a moment away from being disabled or chronically ill and this system? It does not work. It does not work for the majority. And it is time to change it.

But it is not my job to do so. I am tired and just working on surviving in a space designed to have me fail no matter what I do. It’s about time people start planning for their future. Their disabled and chronically ill futures. Futures where they will face the dilemma of which is more costly, my health or my work? It’s about time that people start hearing us, because if the majority of people are going to live like this, why are we letting the system run rampant? Why are we forced to choose between health and everything else? And why aren’t abled people seeing it even though they live with the fear that they’ll experience it?