There is a steep learning curve when it comes to living with a chronic illness. Whatever initial relief a diagnosis brings is quickly replaced by frustration. Your medication doesn’t work as well as the doctor said it would. The top specialist is out of network. And your request for work accommodations has largely been ignored. Eventually, through years of trial and error, you’ll learn how to navigate life as a chronically ill person, but what if it doesn’t have to be that way? Journalist Tessa Miller’s debut memoir, What Doesn’t Kill You: A Life with Chronic Illness—Lessons from a Body in Revolt, proposes an alternative route that uses her nearly decade-long experience living with Crohn’s disease to offer tools for surviving the American healthcare system and life in a chronically ill body. Unlike many media portrayals of chronic illness, Miller’s depiction of Crohn’s disease isn’t sanitized. There’s no sugarcoating or euphemisms. Instead, she offers chronic illness in all the ugliness that’s usually hidden behind closed doors. Miller illustrates her commitment to honesty through a scene in which she clogs her toilet and then spends the early hours of the morning scrubbing her bathroom with bleach to keep the evidence of her “rotting, broken body” from her roommate.
When Miller asked me to blurb her book, I was surprised by how much information she was able to fit in 320 pages. What Doesn’t Kill You outlined much of what I’ve learned as a health journalist and as a person who has spent more than a decade managing chronic illness, including how racism shaped (and continues to shape) modern medicine, the prevalence of medical PTSD, and the ways private health insurance fails those it’s meant to protect. This book is an incredible feat that might also make for an overwhelming read if you’ve been newly diagnosed. That doesn’t mean you should skip reading What Doesn’t Kill You—just come prepared with a highlighter (or two) and a loved one who can help you debrief. Though it may be hard to read that your journey with chronic illness might not be as straightforward as your doctor suggested, it’s a crucial first lesson that would take years to learn otherwise. Bitch spoke to Miller about what it means to inhabit a sick body and the vulnerability that comes with spilling one’s guts about illness and trauma.
You tweeted about how a publisher rejected your book because “poop stuff is too hard to read about.” What made you want to give such an honest and unfiltered look at Crohn’s disease?
Thankfully it was only one publisher that came back and said “poop stuff is too hard to read about,” and the gross factor was too much of a hill for readers to climb. I was told I would really have to change the way I talk about my disease to make it work and I wasn’t willing to do that. I found a publisher who supported [my desire] to explain chronic bowel disease in real language. I didn’t want to use euphemisms for poop or blood. I didn’t want to dance around the realities of what a disease like this does to your body. It doesn’t help my community if I’m sugarcoating what we go through. I want people to read it and understand that this illness is really hard to deal with. It’s unpredictable, it’s cruel, and it’s gross. It’s a bowel disease! There’s no way around that.
When I was first diagnosed, my mom or my sister bought me all these books that had Crohn’s in the title but didn’t really describe what it would be like. It was mostly like, “Here’s some stuff that maybe you shouldn’t eat” and “Try to reduce stress.” I came away from those books without knowing what my disease was going to be like. And so, when I was writing this book, I had in mind a person who has recently been diagnosed with a chronic illness. What did they need to hear from someone who has been through it? This is the sort of the book I wish someone had handed me when I first got sick. If you’re sanitizing it, then the reader comes away thinking, Oh, I feel so much worse than what’s described in this book. Maybe I’m the weirdo. What’s wrong with me? When you get into Crohn’s support groups and start talking to people who have it, it’s like this stuff is really bad and it can be traumatic. I didn’t want to sanitize it. I want people to understand that Crohn’s is more than just a disease where you’re stuck in the bathroom.
There’s a lot of information packed into this book, some of which may be overwhelming to someone newly diagnosed with chronic illness. What advice would you give someone who starts reading and thinks it’s too much?
It was a challenge deciding how much to include in the book. There was probably twice as much stuff in earlier drafts. I think of this book as a primer. I purposely made sure that the book has a complete index and appendixes and each chapter title tells you what’s coming. I hope that people will interact with this book however they need to. If they want to read it straight through, that’s great. If they want to look in the index only for something they’re interested in—maybe they’re chronically ill and they just lost their job and need to figure out how to get health insurance—they can just go to that part of the book. A lot of this stuff is going to feel very close to you so just take care while you’re reading it. Make sure you read the author’s note for content warnings. And feel free to skip around to the sections you feel are most beneficial to you. The last thing you want to do to someone who is chronically ill is overwhelm them. So I hope it becomes a resource that they can write notes in, put sticky notes in, and use as they need it.
Trauma is an overarching theme of the book. Of course there is the medical trauma, but you also talk about childhood trauma and sexual assault. What made you want to explore these topics?
Trauma is this golden thread that weaves its way through childhood into my young adulthood when I moved to New York and was in an abusive relationship, and then, of course, into my medical trauma. The reason I wanted to describe all of those things and the sexual assault was to explain that chronic illness makes relationships complicated. Relationships were already complicated before I got sick and then they became further entwined when I had to rely on people who could sometimes hurt me. I also needed to explain all of those traumas because when I was diagnosed with Crohn’s it brought up a lot of trauma I had buried for many many years. It was this unavoidable volcano of repressed trauma coming out when I got sick. And when I finally started to go to therapy, my therapist was like, “Well, yeah, you’ve been through this recent trauma of being diagnosed with a chronic illness and being hospitalized and going through all of these invasive procedures and facing a lifetime of illness but we also have to dig into all this other stuff you’ve been pushing down.” I want people to understand that there are different kinds of traumas and that they often overlap and rear their heads when you least expect it.
Were you concerned about how your family would react to you talking about these traumas, especially the ones involving them?
You just can’t write about this stuff until you’re really ready to. It has taken me a decade or longer to be able to feel like I’m strong enough, both mind and body, to do this. My biggest fear was that I would hurt my family because these are secrets I’ve carried for a long time. My dad is dead so he has less of a say about what I’m going to say about him but my mom is alive and well. I was afraid that I would cause some pain, but I was very communicative about what I was writing. I let my family read some stuff along the way. I gave them the option to be in the book under different names, to change identifying details. Thankfully my mom and I are at a point in our relationship where she really just gave me this gift and said, “You have to tell the truth.” She didn’t stand in my way when I was writing the book but I was absolutely terrified to let her read one of the last big drafts before I turned it into the publisher. I didn’t want to hurt her.
What Doesn’t Kill You takes on a lot of heavy topics but still leaves space for joy. The last chapter features quotes from more than 30 people living with chronic illness about what brings them happiness. Why was highlighting that dichotomy so important to you?
Joy has become an ingredient in my survival. It looks different than it did when I got sick. True joy had been reserved for job promotions, getting published, and that kind of thing. Now, it’s this active thing where I have to look for it in much smaller ways. When I was writing the book, I was like, well, that sounds fine, it’s a little clichéd but what if I could get a bunch of other people in the community to tell us how they find joy. It became this chorus of people saying there’s this profound true beautiful joy that can coexist with chronic illness.
That was one of my favorite parts of doing the book because I got to talk to so many people from so many different backgrounds. Everyone was so excited to talk about what brings them joy because they’re often talking about the bad stuff and parts of their disease. It was really lovely and everyone had these small moments of joy that were important to them. You’re not going to see a bunch of people saying, “Oh when I made my first million dollars or whatever” in that chapter. It’s like, no, when I’m out running on the beach with my dog and I can feel her freedom even if I haven’t been able to move around well lately. I just go back to thinking of someone who is going to read this book who is newly diagnosed. I want them to know that joy is possible and that it’s necessary for living well with a chronic illness. There’s also this big community of people that you’re part of now and we’re here to lift you up when you feel like you don’t have anyone.
This interview has been edited and condensed for clarity and length.