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Why I Yearn For Others To Understand My Symptoms of an Undiagnosed Chronic Illness

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I was taught not to care what people think. But when it comes to my undiagnosed chronic illness, I yearn for others to understand. I find that my words don’t do my disease justice. The words pain and weakness have become commonplace and don’t carry the graveness equivocating to what my body is experiencing. The more I use these words to describe my symptoms, the more they lose their meaning.

I’m having another flare; another unbearable episode of symptoms that will take away my ability to walk and function for an unspecified period of time. Tears spill from my eyes as I lie in bed with pain that is indescribable; every inch of muscle feels as though it’s being torn to pieces, my joints ache, and I am devoid of any strength I once knew. I’m being treated for multiple sclerosis (MS), but the truth is, this disease strays from what we know about MS; I’m in my own category until we figure out what this MS-like disease really is.

It is not a yearning to be accepted. It is a yearning to be validated. What I experience is far beyond what I thought humanly possible during my “healthy” years. The ignorance was bliss, but I am here to show the world that chronic illness comes in all shapes and sizes, and it can be unsparing and abominable.

So remember my words: pain and weakness. They sound so innocent and reasonable. But they take away my ability to function as a “normal” human being; my ability to stand, walk, drive a car or even to lay in bed and rest. There is no “rest” until the flare ends. And even then, we are fortunate to be back to our baseline, ill-functioning bodies with the same symptoms to a lesser degree.

For all of those who fight chronic illness on a daily basis, keep striving to feel validated. Your words may not do it justice, but your yearning for others to see the truth is as human as it gets. I hear your words, I feel your anguish and it really is as dreadful as you describe.

Follow this journey on the author’s blog.

Getty image via cyano66.

Originally published: January 28, 2020
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