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


“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.


Find this story helpful? Share it with someone you care about.


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

A picture of a cat named "Piper," with white and grey fur.

How My Cat Helps Me Through My Chronic Fatigue Syndrome

I mowed today. Not very exciting or noteworthy, right? Well, when you’re chronically ill, everything can be noteworthy. It’s 86 degrees out. I brought out plenty of water. I took four breaks in the shade even though our yard is small. I sat in the grass, so I wouldn’t have to walk inside. I am [...]
collage with a wolf howling in the middle

Why Attributing 'Type A' Personalities to Myalgic Encephalomyelitis Needs to Stop

I recently had an experience with a relative that caught me off guard. In passing, she mentioned reading somewhere that it’s mostly “type A” individuals who develop ME (myalgic encephalomyelitis). This was followed by a pause and accusatory glance – that felt more like a guilty verdict than a statement. I starred back, blank faced. [...]
woman sitting inside a cardboard box

When Chronic Illness Makes Your World Feel Small

Sometimes my life feels woefully small. And shrinking. Like everything in it exists in a bubble that, at times, starts to feel suffocating or claustrophobic. Part of this is that I am a creature of habit and usually very change-avoidant. Not exactly a recipe for expanding horizons. And I’m afraid that recent health challenges have [...]
photo of the author with the text '5 tips for me/cfs!'

5 Practical Tips for Living With ME/CFS (That Can Really Help!)

Like anyone living with an incurable illness, I’ve been desperately searching for something that will help, even if only a little bit. In the beginning, I watched countless videos of people telling their stories of how they cured themselves through mindfulness or dietary changes and I’d copy their advice, only to have my hopes crushed [...]