It’s a Shame – Part 1: Where It Begins
This article is going to be difficult to write.
You might find it difficult to read.
It’s about shame.
You see, people who have COPD, or any chronic illness, suffer from shame and we need to talk about it. Sometimes we shame ourselves; sometimes others shame us. It can be subtle, such as weird looks when you ride a scooter at the store, to outright ignorant judgments such as “but you don’t look sick,” “but you were fine yesterday” and “people on disability are just lazy.” At worst, it can manifest as budget cuts within government programs meant to help us, and/or guilt in using those programs.
Healthy people may not have any idea that there’s a lot of stigma connected to being permanently ill. They may not see it if they never experience an illness that never ends. They may need us to help them understand.
So let’s help.
Before writing this article, I spoke with many people who have chronic illnesses to gather their thoughts on shame. I wanted to see if their experience was similar to mine. All across the board, it was. This spoke volumes to me.
It means that there are stereotypes of sick people out there. And they are not positive ones.
There are so many points of shame I need to talk about that this one article turned into two articles, then into three, and finally came in at five. And there’s probably more I haven’t thought of. Anyway, let’s start.
Here is the most important vision we have of ourselves, what we want our friends, family, and doctors to know.
The shame starts with simply getting the illness itself.
We don’t want to be sick. None of us “deserve” COPD. None of us.
“I don’t want to be sick/in pain/weak/whatever.”–A
We would all choose to be better if we could. Every single one of us. Being sick is incredibly difficult. Our entire lives have changed. The lives of our spouses and children have changed. Our friends watch us deteriorate. We struggle and we fight just to live and we fight just to breathe.
No one deserves this kind of misery.
“If there’s one thing that stands out, it’s that [people think]…somehow in a grand cosmic way we must deserve what is happening because we’re bad or lazy people.”–CV
I know I did nothing – like kicking puppies – that would get me this kind of bad karma. I didn’t ask for the disease. When I wished I could spend my days lounging around instead of having to work, this isn’t what I meant.
All of that doesn’t matter. I still feel guilty about it. I don’t like feeling weak and having to ask for help all the time.
Even worse, there is little societal sympathy for diseases that are perceived as preventable or caused by bad behavior. Type II diabetes is one, lung cancer is another. And COPD is another. I never smoked, but I have friends with the disease who smoked throughout their lives. Some very definitely feel both ashamed and guilty about getting sick. Some of them think they absolutely did ask for COPD by smoking and do deserve to die from it. I can’t imagine living with this type of guilt. The vast majority of people in the world don’t live with this kind of guilt.
So most of us already have this harsh mindset of self-blame. To have it reinforced by friends, family, medical staff, or even random strangers on the street or on the Internet is brutal, even heartbreaking.
As to those smokers I mentioned, I hope they can think back over their past and forgive their younger selves. I hope they can move beyond the shame, be gentle with themselves, and live the best life they can in the present.
Because, again, no one deserves to be sick. No one.
We want to be seen as worthy people in our communities.
“I get the subtle hints that without a regular full-time job, I am a leech and worthless.”–CS
We can’t work, especially in the later stages of COPD. We go from being productive people in the community to feeling useless, a burden on society. Do you know why? Because most of us are brought up to work hard. To believe that work has value and gives us value. That working hard is the American Dream and when you work hard you deserve financial rewards. When we can’t work, we can’t live up to those expectations. We fail.
To make matters worse, there is a prevailing mindset in some quarters that people on disability income really could work if they wanted. From political stances to silly jokes, it often seems like we’re being told we’re lazy and not sick. Or we’re sick but not sick enough to deserve help.
“When you hear this enough, no matter how hard you fight to believe in your own self-worth despite the negativity, it seeps into your very soul. You start to believe somewhere, at a subconscious level, that you aren’t worth it.”–L
It’s a stereotype reinforced by Internet memes and news articles regarding people who fraud disability claims. Just Google disability memes and pages upon pages of images come up spewing this ridiculous stereotype of awful people who want to just live off of others.
This is not who we are.
We simply can’t work. However much we want to be able to.
This is only two topics out of many. I talk about more important issues in the next four articles:
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