7 Things No One Tells You About Chronic Illness

Maggie Bowyer
8 min readJan 25, 2021

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There is a lot that no one tells you about chronic illness. If you love someone living with a chronic illness, odds are they have felt emotions they will never share with you. Chronic illness is incredibly isolating. Despite having an incredible support system, I still find chronic illness to be permeated by loneliness. It disconnects you from everyone you love on some level. There is so much that able-bodied people do not understand, and that we are too fragile to share.

Before coming to terms with my chronic illness, I was still unaware of how much living with a chronic illness changes one’s life. I was still fighting thoughts of worthlessness and isolation, and that fight was exhausting. When I was first diagnosed with Endometriosis (among other things), I fought to maintain my “normal” life. I quickly realized that my life was not going to stay the same. At first, I felt very alone. It wasn’t until reaching out to other chronic illness warriors that I realized our stories share a lot of similarities.

I learned a lot by scrolling through chronic illness social media, educating myself, and having honest discussions with other people living with chronic illness. After lots of talks with chronically ill friends, I realized a lot of us live a double life. Afraid of saying too much at the wrong time, I have bitten my tongue more times than I can count. There are endless ableist comments I ignore throughout the day or barriers of accessibility I face. Beyond all of that, there is a feeling that the people I love the most do not know the real me.

Beyond all of that, there is a feeling that the people I love the most do not know the real me.

There are a million things I wish I could tell you about chronic illness; moments I crawl through my house, sobbing in pain; that I was at my sickest in this photo, only 80 pounds and in immense pain; burrowing my tearstained face in my cat’s fur; making true friends that send you care packages; anxiously wringing my hands because I am alone in the doctor’s waiting room; a million little moments that truly characterizes chronic illness…

Maggie Bowyer