The Perception of Invisible and Chronic Illness

Yes, it's confusing. I look fine. But I'm not. I have a chronic illness.

It doesn’t make sense. I look fine on the outside. And, I’m so not fine.

Logically, I can understand why well-people seem unintentionally ignorant at times. Because I hardly ever look sick. The old adage “what you see is what you get” doesn’t apply to those with invisible illnesses. Some people will never understand how everyday tasks can be exceedingly difficult or even impossible for me. They don’t see me during the hours I’m at my worst, because that’s when I stay home in bed or spend time on my couch. They probably won’t see the baskets of meds on my shelves or the volumes of medical paperwork I work hard to keep organized. Well-people don’t know how long my morning routine must be to accommodate the difficulty of just getting my body going. Hopefully, people will only see me at my best…as a productive member of society, contributing in my own unique way. Because while I am sick, being sick is not my identity.

But what’s on the outside doesn’t always display what’s really happening.

People with chronic illness can get very angry when the well-people around them speak or act out of ignorance. Well-people cannot ever understand what it’s like to be sick. And the result…some well-people seem to have what might be referred to as “foot-in-mouth disease.” Even the simplest question from a well-person (“How are you feeling?”) can prompt a wave of frustration from someone whose illness can change on a dime and who thus never quite knows how to answer. Though most well-people have good intentions, their uneducated questions, not-so-helpful hints and personal “when I was sick” stories can be exhausting and enraging for the sick.

Personally, I’ve decided to counter ignorance with love. That means when I get an uneducated question, I try to respond with grace. And when I get those helpful hints on diets, exercise, vitamins or the latest treatments, I listen to see if by chance they know something I don’t that actually might be helpful (even just a sliver of helpful). And when they offer their “when I was sick” stories, I pull out as much empathy as I can find…because even well-people like to know their story is valuable.

So, go ahead and wonder what it’s like to have chronic or invisible illness. But if you ask me…and really mean it…be prepared for my honest answer. Because everything is not always as it seems.



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3 thoughts on “The Perception of Invisible and Chronic Illness

  1. I’ve been trying to put what you just said into words all day. No, I don’t necessarily look sick. No, I don’t expect everyone to understand. But it gets a little frustrating sometimes. Well said, and I applaud you on your effort to respond with kindness and grace. Sometimes it’s a bit difficult. 🙂

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