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The Part of Chronic Illness That Nothing Could Have Prepared Me For

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“I’ll see if I’m up to it.”

“I’ll really try and see you this week.”

“I hope I can make it to that concert!”

“I don’t know how I’m going to do this.”

If there is one aspect of chronic illness that nothing could have prepared me for, it is the gap between my expectations and my reality. The distance between what I want, and what my body can handle.

When chronically ill, whether with physical, mental or emotional struggles, meeting the demands and standards of a “normal” life often feel just out of reach. This is not for lack of wanting, but rather a lack of ability – while others around us can climb mountains, on some mornings, rising from our beds and walking to the bathroom feels as insurmountable as scaling Everest.

I watched as others my age worked nine hours a day, still having energy to go out for drinks after work, and felt my spirit being crushed by inadequacy. My version of a successful day is managing to last my entire five hour shift, and walking home without needing to stop and rest along the way. My unsuccessful days amount to little more than bed rest and medication. I would listen on, envious, as my healthy coworkers complained about their extended hours. I now long for the time when I was able to work normally. I miss the sense of purpose and social connection.

On the rare occasion an extra activity is planned, I go in expecting to feel the consequences of my additional exertion for at least one day after. Sometimes, my flare-ups have no clear cause, rushing into my schedule as if invited.

The physical symptoms come and go, and I have developed an ability to accept and relax into them. What has not quite settled, however, is the feeling of profound guilt, the fears that I am not enough – busy enough, strong enough, healthy enough, do enough.

In our culture, it is far too easy for those of us who struggle with chronic illness to internalize the message that we are only as good, as valuable, as the work we are able to produce. If there is one thing that illness teaches us, however, it is that we are not machines. We are not built to produce, grind and push ourselves beyond human limits – our bodies and minds are fragile. Chronic illness can slow our lives to a halt, leaving little room for activities beyond the bare minimum.

So how do we grapple with this reality – this new normal?

We meet ourselves and our bodies wherever they are at. We search for the hidden gems buried deep within the caverns of our struggle. We resist the urge to compare ourselves and our abilities to those who are working with an entirely different set of tools than our own.

And most importantly, we must hold our own unique challenges, our differences and our burdens, with an open heart.

We must remember that, when we cannot get or do everything that we want, we sometimes find…we still can get what we need.

Originally published: May 31, 2018
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