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What to Read: Natasha Lipman is living well with chronic illness
This interview has been lightly edited for length and clarity.
What’s your Substack about in one sentence?
The Rest Room explores what it means to live (and live well) with chronic illness, with a podcast and personal essays for people living with chronic illness, the people who work with them, and the people who love them.
What does your Substack offer readers that they aren’t getting elsewhere?
My Substack focuses on reconceptualizing how we think about what it means to live with chronic illness. Hearing where I struggle, and what I’m trying to figure out with all of this (for example: the pain of hope after a new diagnosis, or being scared of your own body), helps my audience connect to the wider concepts we’re discussing. And that’s so often missing in a clinical environment.
Living in the U.K., we see health as a binary thing: You’re sick or you’re not. You get better or you don’t. We don’t seem to have much of a cultural understanding of that place in the middle—where you stay sick. And this translates to the medical care most people receive, especially with under-researched and underfunded “invisible illnesses.”
There’s also often a failure to recognize that these conditions can impact every single aspect of our lives—from our relationships and hobbies to our ability to work or even feed ourselves—and these deserve support too.
I recently, and very nervously, opened my first Substack discussion thread, and someone commented: “You have created something valuable in that space between what is said/not said at a doctor’s clinic and how life happens.” I think that really summed up what I’m trying to do.
In your podcast, you speak to experts on topics like recovery, brain fog, and self management. How do you decide on what to cover?
I try to create the content that I needed to read when I was first diagnosed [with Ehlers-Danlos Syndrome] aged 21. Alongside more expert-centered resources, I share personal essays. A lot of this is informed by my own experiences, the experiences of people around me, and asking my audience about what would be most helpful to them.
I’m particularly interested in some of the fundamentals of “self-management”—what are the things that I can do in my day-to-day life that can help me suffer less. I take a big topic that I have struggled with, like pacing or how to move safely with chronic pain, that can be broken down in all sorts of ways. I then make a point of trying to find experts who have experience of chronic illness themselves, or are particularly empathetic and understanding. Oftentimes, they’re people I’ve worked with personally.
These topics are really challenging and emotional, and so it’s important to always go in with the mindset that everyone is different, whether that be in terms of the severity of their illness, how it impacts them, what kind of support and resources they have access to, or even their personality. While it’s impossible to make something for everyone, I try to be really mindful of that in everything I create. It’s more opening up the conversation, asking questions, and gently exploring our own unique experiences.
It’s important to always go in with the mindset that everyone is different [...] While it’s impossible to make something for everyone, I try to be really mindful of that in everything I create.
How do you balance running your Substack alongside your own illness?
It’s hard. You want to get into the flow of things and just write and write because you have so many ideas, but your brain and body is screaming at you to stop. I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress.
Fortunately, due to the nature of what I write about, my audience is very understanding. So when I am having a difficult time and struggling to write, I can say that I’m taking a break, and then … take a break. Experimenting with different formats (the comment threads are a great option, for example, to enable me to get to know my audience without having to try and force out an essay when I’m not well enough) is something I’m looking forward to exploring more in the future.
I’m also extremely fortunate to have a brillant producer, Philly Guillou, to work with on my podcast—it literally wouldn’t exist without her, because I don’t have the capacity. So it’s also important for me to think about where I can get support to help me produce content more regularly.
What do you wish others understood about living with a chronic illness?
I’ve started to be able to take my first tentative steps walking by myself to the shop on the corner without a mobility aid. Physical challenge aside, one of the things I’ve had to deal with as I’ve moved from wheelchair to rollator to just me is fear. There’s an inherent safety in a mobility aid—a signal for people to be aware, to not come too close to me, and to understand why I may be slower or need some help. Without it, I just look like a healthy 33-year-old. It’s like I’m suddenly undercover again. It’s like I’m going back to a place where people will be frustrated with me because they don’t know. And they don’t know it took me five years to be there like that.
This, to me, highlights something I learned over the years: you never know what someone is going through just by looking at them. That applies to chronic illness or anything else in their life. I think it behooves all of us to take a step back and recognize that. It has made me more understanding, empathetic, and patient.