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Why I Don't Think Healthy People Will Ever Understand Chronic Illness

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I don’t think healthy people will ever really understand chronic or rare illness.

“But you just got the new diagnosis, aren’t you better? I thought you’d be better by now.” This honest statement surprised me and made me realize something.

Most healthy people don’t “get it.” They don’t get that just because you have a diagnosis doesn’t mean you have all the answers. Sometimes you might have access to medications or possible treatments, assistance, or a better parking spot, and sometimes you might be offered better pain medications — but all of this usually boils down to luck.

the author and her husband

They don’t understand our conditions are a forever thing. One day we might feel good, maybe even for a week or a month — but that doesn’t mean we won’t need our aids anymore. Chronic illness is not linear, and will usually make a great comeback in the following hours or days, which makes it hard to plan. We cannot plan our next “good” day. We don’t know when a flare will strike. 

When able-bodied people are sick, they usually get better.

When we say we will never “get better,” they often think we’re being dramatic and pessimistic.

Sometimes, our illness just sounds like an excuse to them.

So, I don’t think they’ll ever “get it,” because to do so, you need to live it.

Originally published: June 12, 2018
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