The people who get it, get it
A li'l pep talk for the niche Substack writers out there
I keep having the same conversation. With fellow Substack writers. With an artist coach. With my damn therapist. Am I doing the right thing? Am I doing this Substack the right way?
My newsletter, The Heart Dialogues, covers a niche topic: people who were born with heart issues, aka people with congenital heart disease. This niche encompasses millions of people around the world, including probably about 1.5 million adults in the U.S. alone, plus their parents, partners and friends, plus a sizable chunk of healthcare providers.
And yet, it is a niche. I’m not writing about parenting or growth hacks or technology news or any subject with an inherently broad audience. I’m not writing about living in New York City, reading books, being an aunt or any one of the other subjects I could credibly cover that also have broader appeal. I’m not one of those Substack ladies who writes witty and moving essays about her observations from the week, whose work could conceivably bring in any type of reader. No, it feels like there’s an inherent ceiling to my growth.
Moreover, congenital heart disease is a topic that some find uncomfortable to even think about. When I told someone at a Substack meetup what my newsletter covers, the response was, “That’s intense.” One perfectly lovely Substack writer told me that she would never recommend my newsletter because her readers aren’t my readers. (I hadn’t asked.) A source I interviewed called the topic—not inaccurately—“death approximate.”
I’m also making it difficult for myself because the people who do want to read what I offer—nuanced, careful writing and reporting about being a person with a congenital heart condition—mostly haven’t heard of Substack. (If I had a dollar for every time someone called this a blog, well, I’d never turn on paid subscriptions.) The Venn diagram of people interested in congenital heart disease and people who subscribe to Substacks is small. Finding the subscribers in that overlap has been a lot of work.
I’ve done and continue to do the work. I’ve been a journalist for 15 years. I’m currently heading up the newsletters team at a major U.S. newspaper. I’ve studied writing since sleepaway camp in my ’tween years, all the way up through grad school. Most of the newsletter editions I publish involve reporting, many rounds of edits, or both. Since launching in February, I have published every other week, without fail. I spend time selecting art, workshopping headlines, writing social language. I’ve engaged in collaborations with other newsletter writers, podcasters and nonprofits. And if I’m being perfectly honest, I’m waiting for my hockey-stick growth. Do I deserve it? Nope. As Summer Brennan recently (and virally) put it, “No one is entitled to success in their writing.” Do I still hope it happens? Yes. Did I think it would have happened by now? Kinda?
And yet… I keep going.
Here’s what I tell myself: The people who get it, get it.
The readers who tell me they feel seen. The woman who is making plans to see a cardiologist again after reading my newsletter. The doctor who had never shared her story publicly until she did with me. The nonprofits who have added my Substack to their online resource lists. The makers who have collaborated with me. My parents (!), who are getting a deep look at how my heart has affected me. The normal-hearted folks who had never heard of congenital heart disease and are now aware. None of this shows up on an analytics dashboard.
Plus, I genuinely love this work.
I love reviving a writing practice that had gone fallow amid the grind of the job. I love having an outlet for my ideas to take shape. I love building a community of people who have gone through some of the same things as me. I love being able to ask them all the questions I’ve bottled up for years. I love the moment when an idea for an essay strikes. I love the revisions, smoothing out the choppiness in a rough draft. I even love the meditative process of selecting art and adding links, getting everything just so before hitting “send.”
It’s so easy to focus on subscriber numbers, to compare ourselves with other newsletter writers, to question over and over again, Am I doing the right thing? This will probably never go away.
But you don’t have to win over everyone. Not everyone has to get it. When the right people find it, they understand. In the meantime, remember what you love about this work. Make a list. Don’t forget it.
And, hopefully, I’ll get better at taking my own advice.
Thank you for writing this post, Leigh!. As a fellow CHD Substack writer—albeit from a different perspective— I definitely "get it." The reason people read Henry's Heart is because they care about my family. This is a great reason, as we are in the thick of the early days of the single ventricle path at only 3.5 months old. I'm not trying to go viral at all; in fact, I worry about what my son will think of all of this when he's older. I hope I'm respecting his privacy and dignity. (I would so love your perspective on the phenomenon of families sharing their babies' health journeys publicly)
The reason I read and recommend The Heart Dialogues is because I hope where we are now really is just the very, very beginning. Your writing—particularly your profiles of specific adults with CHD—helps me strategize for the future as a parent. I recognize that CHD patients and their parents are two vastly different groups, and that your community here is much, much more geared toward the former. But when you talk about your relationship with your parents, and how their memories of your early CHD days are so different from yours, I take notes for my parenting journey with my son. I know I'll never fully understand what it's like to be him, to live with single ventricle physiology, or to feel different from others with a nearly invisible illness. But perspectives like yours will, I hope, help my family weave CHD into our everyday lives in a nuanced way.
As for why outsiders are not subscribing to your Substack, I honestly think people don't care about medical-related information unless they have to (or, unless they're worried they will one day have to). Unlike cancer, for example, CHD isn't something one can acquire later in life. I say this because I probably wouldn't have sought out your Substack before I knew I'd be a part of this world myself. Hopefully, projects like yours will change that.
I love your candor in this piece. Anything CHD is difficult --especially advocating! Oh, the number of days I woke up and wanted to quit and never think about any of it again! I predict The Heart Dialogues will grow ( just like the Zipper Sisters have over the past dozen years)! Keep going, and thank you!