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. 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…

Friendship changes when you get sick, and it hurts. — 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…

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

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

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

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

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

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. 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. …

It’s a process, not an event — 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…