125
you are viewing a single comment's thread
view the rest of the comments
view the rest of the comments
this post was submitted on 30 Oct 2023
125 points (98.4% liked)
Asklemmy
43728 readers
1461 users here now
A loosely moderated place to ask open-ended questions
If your post meets the following criteria, it's welcome here!
- Open-ended question
- Not offensive: at this point, we do not have the bandwidth to moderate overtly political discussions. Assume best intent and be excellent to each other.
- Not regarding using or support for Lemmy: context, see the list of support communities and tools for finding communities below
- Not ad nauseam inducing: please make sure it is a question that would be new to most members
- An actual topic of discussion
Looking for support?
Looking for a community?
- Lemmyverse: community search
- sub.rehab: maps old subreddits to fediverse options, marks official as such
- !lemmy411@lemmy.ca: a community for finding communities
~Icon~ ~by~ ~@Double_A@discuss.tchncs.de~
founded 5 years ago
MODERATORS
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!