I Don’t Want to Be the Chronic Illness Chick

My somatic therapist has been encouraging me to write about what I’ve been going through since being diagnosed with MCAS. But when you have a serious illness hit you full force, completely stopping your life, it takes a while before you can get your head around it. In addition to trying to survive the day, you’re also navigating medical appointments, extensive lab work, and a long list of medications and supplements you’ve never heard of.

It wasn’t until 18 months into this illness that I had the capacity—and space from it—to write without feeling consumed by the gravity of it all. And I had real concerns that writing would increase thinking about it, which would then reinforce symptoms. The brain is very powerful that way.

There are people online who document their illness by showing it all—medical appointments, bad days on the couch, not being able to attend events with friends and family and much more. There is nothing wrong with this. In fact, I think it’s important to show others what a day in the life of someone who is chronically looks like—especially when you have an invisible and mysterious illness (like I do), where “you don’t look sick.” The people who are showing up like this online are incredibly brave. But it’s not how I want to show up here.

When I decided to make my writing public to help others, I didn’t know what that would look like. I just knew I didn’t want to be the “chronic illness chick.” So how do I write about the experience of having a chronic illness—one that no one in my life had heard of—without it becoming my entire identity? I don’t know. I’m still figuring that out.

My first week on Substack, the algorithm started filling my feed with people suffering from chronic illness, which made perfect sense. And so many of their notes resonated with me. It’s like they were able to read my mind, which was very validating. But something else happened, which surprised me. I could feel how activated my nervous system would get when I would come across these posts. I realized I didn’t want to read about their illness—the bad days, the symptoms, or how limited their life is. And not only did I feel guilty about this, but it also confused me. How could I start a Substack about my experience with a serious condition, but be triggered (I hate this word, by the way) by reading about someone else’s?

I brought this up to my somatic therapist and she explained how writing gives you agency and is regulating to the nervous system, but reading about someone else’s experience—detailed, raw and in the moment—can make you feel powerless. I’m not triggered by someone’s illness; I’m triggered by helplessness. Also, when we write, we express. When we read, we absorb.

This doesn’t mean these authors are doing anything wrong. They are doing exactly what gives them power over their situation, and I suspect helping thousands in the process. The lesson for me was to listen to my body, not my mind. My mind was telling me I should want to read about other people’s illnesses, and if I don’t, then what business do I have to write about my own. But my body was telling me, writing is helping you, but reading someone else’s moment-to-moment description of their worst days is not.

And although my plan was never to adapt that style to my own Substack, it confirmed for me that wasn’t the direction I wanted to go. While I don’t want to sugar coat what this illness has done to my life—and have no plans on ever making it sound easier than it is—I also want to come from a place of hope and renewal. Because that’s exactly what I need. And I’m guessing it’s what you need to.

“God is near to the broken-hearted and saves those who are crushed in spirit.” Psalm 34:18