Things I Hate Hearing Living with Chronic Illness
Living with a chronic illness like Crohn's disease or ulcerative colitis is hard. So many aspects of the condition are invisible which makes it even harder in a sense. Others do not understand the struggles and will make comments that are rude, hurtful, or just plain ignorant.
There are certain phrases and comments that I really hate to hear. When I hear these comments, certain thoughts run through my head. Below are some of the comments and what I am thinking when I hear them.
The comments that I hate to hear with Crohn's disease
When people say “you’re so strong”
You have no idea how much I am melting internally. I haven’t slept for 4 nights and the stomach pain I experience makes me want to be rocked again by my mom in a rocking chair.
Does that make me strong? Strong isn’t a choice. Being sick isn't a choice. Being strong when things are really rough is the only way we survive and try to thrive with an illness. Do you understand that? Don't tell me I’m strong.
Comments like “you’re so brave”
What choice do I have? I’m brave? Brave for waking up the next morning with zero control over what happens to my body throughout the next 12 hours? Don’t call me brave; I’m simply functioning as the best way I’m able to do.
I'm brave for going to bed at night knowing I'll wake up and the monster I call illness will still be there? Haunting me as my shadow? My coping mechanisms in response to denial work hard when you tell me I’m brave. Don’t tell me I’m brave.
I hate when people say “at least...”
Any time you use this phrase with me, you’re trying to bargain my situation... without my permission. Don’t. Telling me in your form of polite “it could be worse” lessens the value of us being validated.
When you say “at least”, we feel the opposite of what we actually need - validation. By saying “at least...” it makes us feel less valued and doesn’t give us the feeling that you actually support us.
It just gives us the feeling that you view our ailment or disability as something than what actually impacts our lives in a great big way you clearly don’t yet understand. When you tell me “tt least...” you’re bargaining my situation with cards you have never been dealt in the ways, but I live to see how the hand is played every day & every night.
What comments do you hate to hear with Crohn's or UC?
Can you relate to these? Are there any additional comments that you hate to hear? How can we properly respond to these comments too when we hear them?
Alternatively, what are the things you like to hear, things that make you feel validated, and things that make you feel supported by others who try to understand?
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