this post was submitted on 30 Oct 2023
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I am a caregiver for a person with rare b-cell lymphoma (chronic illness, treated with a biologic drug rather than chemo) and I've noticed 90% of people don't understand what chronic cancer means. People can't really comprehend someone being better than on their deathbed but much worse than their "normal" health and energy level, and that state will never end. I think popular culture portrays cancer as either "about to die" or "in remission", rather than showing portrayals of the weird in-between state many patients find themselves dealing with.
Society is not able to understand chronic illness. Full stop.
The bias is you interact with people able to do normal society actions, because all the people who can’t are not interacting that way.
You grow up as a kid thinking,”this is how things will be for me and everyone I know. This is normal.” Then you experience chronic illness and realize you NEVER get “better” (read back to 100% fine). I am guilty of this. Then I didn’t get better.
We hide so much in how people suffer. We hide how illness impairs the lives of many in the US especially. We work to get basic medical care. So many are forced to show up broken to work, and hide it to retain care. Once we can no longer show up to the job as it demands, we get fired or are forced to resign, or in the most ideal of circumstances, we are forced to take long term medical disability.
I work every day not to avoid that end, but to forestall it for a little while longer. I buy time in the currency of my stress and well being. Once I am not “in society” any longer, my disability will be hidden and whoever takes my place gets seen.
The world doesn’t understand chronic illness because it’s hidden unless it happens in your household or to you.
I am very sorry. Sending my best to you!