The pandemic has triggered a wave of reflections about how hard it is to stay at home, but many of us have been doing it for years.

I originally shared a version of this story on Episode 131 of the Stories We Don’t Tell Podcast.

Photo of a white woman with long brown hair lying in bed reading a book. There is dappled sunlight shining on her and the bed
Photo of a white woman with long brown hair lying in bed reading a book. There is dappled sunlight shining on her and the bed
Photo by Annie Spratt on Unsplash

As of last week, I’ve officially read 200 romance novels. Most of them have been set in 19th century England, although occasionally characters travel to Europe or America. Almost all of the heroes and heroines have been aristocrats, which I find comforting and appalling at the same time. But the funny thing is that I don’t think I’d ever read a romance novel before I began living most of my life at home three and a half years ago.

That’s when I got sick, and I couldn’t keep up with my life anymore. My body began to misbehave in sudden and unexpected ways, my brain grew foggy, and I became extremely unreliable in a way that was antithetical to everything I’d ever cared about. …


Lots of people are disabled but undiagnosed, so why don’t we hear many stories about that experience?

I originally shared this piece at TEDx Deerfield in February 2020.

photo of an asphalt road with bare trees on either side disappearing into grey fog.
photo of an asphalt road with bare trees on either side disappearing into grey fog.
Photo by Wes Hicks on Unsplash

When I was 29 years old, I got so sick that I had to stop working. I had this intermittent burning pain in my legs, I woke up each morning with sore and swollen joints, and I had a visible tremor. My body was so sluggish that I often needed help to get to the bathroom, and my brain was so foggy that I could barely read. I eventually quit my job as an editor before I was fired for making too many obvious mistakes. …


Friendship changes when you get sick, and it hurts.

photo of four people standing with their arms around each other’s shoulders, looking away from the camera at rolling hills.
photo of four people standing with their arms around each other’s shoulders, looking away from the camera at rolling hills.
Photo by Helena Lopes on Unsplash

I have not always been a great friend. I can be selfish and easily distracted, and I’ve experienced just enough tough stuff that sometimes my capacity for empathy takes a bit of a nosedive. I’m telling you this because I don’t want you to get the impression that I think I was a perfect friend before I got sick. I wasn’t. But my friendships have always been really important to me.

When I interview people about their experiences with chronic illness and dynamic disability, friendship is a painful subject that comes up a lot. You lose friends when you get sick. …


When you’re chronically ill or dynamically disabled, it feels like your whole life is about trying to get better

Image for post
Image for post
Photo: Roco Julie/Flickr

It feels like I’ve been trying to get better my whole life.

I was trying to get better in middle school when I carried a small cooler pack of homeopathic remedies with me everywhere I went. And I was trying to get better in high school when a naturopath put me on a special diet and my mom and I tried to make our own gluten-free bagels, boiled dough and all. …


When you are chronically ill or dynamically disabled, you must constantly let go of the person you used to be.

Dim photo of many lit tea lights receding into a black background.
Dim photo of many lit tea lights receding into a black background.
Photo by Mike Labrum on Unsplash

I had my first adult experience with grief when I was 22 and my dad died.

I learned that grief made some people so uncomfortable that they kept quiet or tried to console me with a silver lining. I learned that support sometimes came from unexpected places, from the people who’d known grief too. And I’ll never forget that when I asked somebody for some grace because I could barely get out of bed in the morning let alone show up perfectly in all of my relationships, she suggested that I was lying about my grief.

Imagine that feeling for just a second. Imagine losing your father after watching him steadily decline for five years. Imagine trying to act normally at school and in public, even though you can’t quite remember what normal even looks like. Imagine that somebody you care about tells you that they saw you acting normally, and so you must not really be grieving that much. You must be using your grief as an excuse. …


For people living with chronic illness and dynamic disability, rest is part of the solution not the problem.

photo of a chihuahua’s head peaking out from a pile of blankets.
photo of a chihuahua’s head peaking out from a pile of blankets.
Photo by Vlad Tchompalov on Unsplash

In 2017, my health was the worst that it had ever been. I had a tremor, my nerves ached, and my cognitive function was so poor that I could barely read. I stopped working, since reading was a critical part of my job as an editor.

I’d dealt with health problems before, and for the most part I’d learned to manage them through diet and supplements and other lifestyle interventions that are easy to find when you’re looking for resources to help you get well. I read blog posts about wellness and I listened to podcasts about wellness and I devoured books about wellness. But in 2017, none of those recommendations were helping me. …


Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but.

photo of a woman walking away from the camera down a cobblestone city street.
photo of a woman walking away from the camera down a cobblestone city street.
Photo by Clayton Fidelis on Unsplash

The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa.

And when I talk to people with chronic illness, lots and lots of people tell me that they aren’t sure if they’re allowed to call themselves disabled. I’ve interviewed more than 60 people about their experiences with chronic illness and I hear different versions of this same idea over and over again: “I’m not sure if I’m disabled enough. …


There comes a point when building your best life is more important than chasing the wellness you’ve lost.

Silhouette of a person holding their arms out wide and letting what appears to be sand fall through their fingers.
Silhouette of a person holding their arms out wide and letting what appears to be sand fall through their fingers.
Photo by Mazhar Zandsalimi on Unsplash

Dear friends, family and well-meaning acquaintances:

I know that you care about me. Every time you ask how I’m feeling or if I’m heading back to work soon, I know that you’re asking because you want me to be well. And there was a time when I wanted that for myself too, when I wanted that more than anything. A time when I spent all of my energy and money just trying to be well. But something has changed for me that I really need you to understand.

After years of trying every diet and taking every pill and detoxifying in every possible way, I realized that my life was passing me by. I realized that if I kept putting all of my resources into the dream of one day healing, then I would have no resources left for writing essays like this one or for really connecting with the people that I care about or for savoring the perfect solitary moments that still sometimes come along. I realized that my life, not my wellness, is what I care about the most. …


For one weekend, I forgot about my strict self-care regimen and became a person I’d nearly forgotten about. It felt wonderful.

I originally shared this story at Stories We Don’t Tell in September 2016.

Photo of a woman in a pink dress looking over a balcony railing past fairy lights and a chandelier into a formal event.
Photo of a woman in a pink dress looking over a balcony railing past fairy lights and a chandelier into a formal event.
Photo by Alasdair Elmes on Unsplash

The first thing Sonia tells me after I walk through the door to her apartment is that she has gluten-free buns for the burgers. We’ve been friends since college, so she’s pretty familiar with my revolving dietary restrictions, even on the evening before her wedding when her home is filled with guests.

When I used to visit Sonia and our friend Molly in Chicago during grad school, we would stay out until four in the morning, dancing and drinking and eating the greasiest late night pizza. We’d wear matching fluorescent tube tops and curl our hair, then cab around the city before crashing in somebody’s living room and waking up to a giggling hungover debrief in the morning. …


It’s a process, not an event

A doctor talking to the patient about their diagnosis.
A doctor talking to the patient about their diagnosis.
Photo: wutwhanfoto/iStock/Getty Images Plus

You probably know somebody who always seems to be sick but can’t really explain why. Or maybe you’re the one who’s been labeled a problem patient. And if you’re anything like I was, you probably think diagnosis works the way we see on TV: Somebody with a mysterious illness heads to Princeton-Plainsboro Teaching Hospital or Grey Sloan Memorial Hospital, and an intrepid doctor figures out exactly what tests to run to solve the mystery. Alas, things do not usually work this way in the real world.

When my health began to decline rapidly in 2017, I didn’t know how diagnosis worked, either. I was still looking for that elusive intrepid doctor who would explain what was going on with my body. But when I couldn’t find them, I decided to start talking to other people with chronic illness about their diagnostic experiences and eventually turned those conversations into a podcast called No End in Sight. Sixty-plus interviews later, I’ve realized that misconceptions about the diagnostic process leave many patients unsupported and uncertain about their own symptoms. Here’s what I’ve learned about the stages of becoming chronically ill. …

About

Brianne Benness

Host of No End In Sight, a podcast about life with chronic illness. Co-founder (& former co-producer) of Stories We Don’t Tell in Toronto. She/Her.

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