"We Emerge Changed Forever": An Interview with Rachel Katz
On intuition, work culture, and creating the Lady’s Illness Library.
Our latest interview is with a fantastic writer and health advocate:
! She was co-founder and CEO of a Silicon Valley startup, which she sold in 2020, and during her tenure dealt with various chronic issues. Her own Substack, called Inner Workings, covers mysterious women’s diseases, work culture, mothering, money and power. She has also created the Lady’s Illness Library, where she interviews women about their unconventional illness journeys. Earlier this summer, I spoke with Rachel on her podcast about my own journey with uveitis, which you can listen to here. Rachel and I discuss a new approach to work culture, motherhood, and more below! I hope you enjoy.How would you describe yourself in three words?
This is hard! First ones that come to mind: Introspective, Ambitious, Motherly.
What made you first start your Substack, Inner Workings?
I’ve always wanted to “be a writer,” and to me, that long meant “having a published book.” In my twenties, I spent five years writing a book, getting an agent, re-writing the book, and rewriting it again. Then we weren’t able to sell it. After that, I stuffed my writer ambitions away as I worked at my “real” career.
When I was done with my startup, I wanted to turn back to writing. I had a lot to process around work and health, and I process best through writing. I started by spending nine months slowly writing a series of literary essays, mostly for myself. Eventually, I submitted many of them to literary magazines. It was a very slow and very satisfying process of creation. I started to feel like “a writer” again. But I had no sense of who was reading my work, if anyone. And as much as I like journaling and writing for myself, I still had a drive to find readers who resonated with my work.
My friend
had started a Substack and it seemed like a good way to experiment with public writing in a new way. I was always scared of the internet, I basically don’t have social media and am generally a slow adopter, so the idea of writing online was somewhat terrifying. But Substack offered a perfect onramp for me. It was a safe space to experiment. I found that it helped me consistently put writing out into the world, which makes me feel like the writer I am, book or no book.Your writing is mainly focused on covering your experience with chronic illness. Which chronic issues do you have?
When I was running my startup, I had a series of undiagnosed symptoms. I had chronic diarrhea for years, heart palpitations, rashes all up and down my legs that came every night for a couple months. There were periods when I had intense fatigue–I could sleep fourteen hours and wake up tired. I had chronic sinus inflammation and colds every couple weeks for a long time. Despite doing the rounds at specialists, I never found any answers.
After I had my first child, I was diagnosed with Hashimoto’s, or thyroid autoimmunity, which is the most common autoimmune disease and mostly strikes women. Postpartum Hashimoto’s is quite common and it’s not clear why. Anyways, presumably my Hashimoto’s had been evolving for a while, as autoimmune conditions tend to do. So that was likely a factor in my previous symptoms, as well as the immense stress I was placing on my body. I’ll never know for sure.
At various times, I’ve also been told I have SIBO (small intestine bacterial overgrowth), and hormone imbalances like low cortisol. I was diagnosed with anxiety and OCD in middle school. I also have a chronic foot issue called Frieberg’s Disease that caused chronic pain in my foot for about seven years in my twenties. That was a time when most of my peers were not dealing with chronic pain, so I felt very alone in the experience.
Where are you currently in your health journey?
Right now, I am in a place where my health is not my top concern each day, so I feel very stable relative to previous periods. That’s why I can go out and talk to other women about it–I don’t think I could do all these interviews if I were still in the thick of it, which is why I so appreciate the people who spend the time and energy to talk with me in the middle of it all.
That said, because of how much deep investigation I have done into Hashimoto’s, autoimmunity, and the microbiome, I am hyper-aware of parts of my body that feel off at any given time. I struggle with constipation, which I’ve written about publicly, and which I’ve found is so, so, so common among women my age and older. Constipation has already been identified as a leading indicator in all kinds of diseases, from MS to Parkinsons, and I believe that over the next decades we will learn more about this link.
I say all this because I think in some ways I can’t unsee what I’ve learned, and that has pushed me towards hypervigilance, which I have to work hard to balance. I can easily spiral when I get a cold, thinking it’s an indication that everything is falling apart again, but really it’s just a cold. So I need to continue to remind myself that I can’t control everything.
I am also still on a diet that eliminates gluten and dairy, and has a few other major restrictions. Sometimes I feel crazy for doing it, though I feel confident it’s right for me (for me, not for everyone!). It’s really hard a lot of the time. So that’s just part of my life now.
Your illness caused a big shift in your career. You write about how you used to be a CEO of a startup in Silicon Valley, until this was harmful for your health.
Well, I think that I need to clarify–my health was really, really bad, and I did not quit my startup. My lowest point health-wise was in 2018, and I didn’t get out in 2020, and only after I was able to successfully sell the company. I actually didn’t leave in the name of my health, I just got lucky and found an exit before I did even more damage. This is something that I constantly think about and write about–why I stayed. What it would have taken to get me to leave.
I worked at the acquiring company for a year, and then I went out on my own as a writer. I also had two kids. So overall this period of time has been a massive shift in how I spend my energy, I have been focused on reserving time and space for sleep, and generally not rushing all the time. Sometimes I succeed at this and sometimes not–it’s so deeply programmed into me that I must be cramming things in or I’m not making the most of my life.
What do you look for now in a work environment?
I’m frankly not sure where I’ll go from here. Recently I’ve been craving the feeling of working on a team again–writing is so solitary. If I do go back into a more conventional work environment, it will be a big experiment: can I do it in a healthy way? Honestly, I never have. I don’t know how.
You also have a great section of your Substack, called the Lady’s Illness Library. How did this come about?
I felt like I kept talking to women with these same types of chronic illnesses–sort of unclear what they are, sometimes mild, sometimes really bad, all sort of seemed related but not officially, all ignored by doctors. Then I read Sarah Ramey’s book, The Lady’s Handbook for Her Mysterious Illness, and it was an a-hah moment for me.
She lays out all her own research and theories about how all of these illnesses are related. It felt so true. But also kind of hopeless because it has taken so long for people to pay attention, though I think that’s starting to change. I just felt driven to contribute to that cause by documenting these stories one by one, hearing from the women themselves.
What do you find to be the most helpful from speaking with other women about their conditions?
For me, it’s fascinating to hear the commonalities in the experiences, even with very different conditions. Most people talk about a journey that’s cyclical or up and down. Nothing is linear, there is no final solution where you brush off your hands and move on. We emerge changed forever, which can be scary to say, but when I hear women talk about it I am always struck anew by their wisdom, their empathy, the perspectives that grew out of the experience. And there’s so much nuance. These experiences suck and they are also beautiful. It makes no sense. I love that complexity.
I like the way you talk about intuition as an “inner working.” What’s the last time you trusted your intuition and felt the results?
Trusting my intuition is something I try to work on daily. I spent the first thirty years of my life ignoring it, so I’m still a child when it comes to trusting my gut. For me “trusting my intuition” basically means constantly checking in with what my body is feeling, and then not brushing that aside. Did that conversation make my stomach feel a little nauseous? Maybe I shouldn’t engage with that person anymore. Do I feel tired? I need to figure out a way to nap.
The way our work culture is set up, you have to ignore these things in order to survive. Right now I have the privilege of time and space to turn that on its head–in order to survive I need to honor these intuitions over everything else, and then design a life around them. I’ve found that a lot of women who have chronic illnesses are driven to make a change like this. So maybe it’s more possible than we are led to think.
Has your fertility journey and having a child changed your relationship to your body and your chronic illness?
Phew, yes. I mean, for the last four to five years I have basically been trying to conceive, pregnant, postpartum, or breastfeeding. I can’t remember what it was like to not be thinking about conceiving, growing, or nursing a baby, and I am very curious to see what that will be like when it happens again.
My health has gone through various phases during this time, but overall has remained solid enough to support this baby-having. I have many moments of feeling really grateful for this. I wanted kids more than anything, and there were a number of years when I wasn’t sure how that was going to happen. The actual process of having babies had been (surprise surprise) insanely energy intensive, and even though that’s super obvious it has still surprised me. I’m really grateful, and sometimes genuinely super surprised that my body has been able to handle it.
What helps you get through the harder moments?
Sleep, showering, eating nutritious food. Honestly, I wish I had some magic mantra to tell you or a meditation practice or something really elevated, but it’s back to the basics for me. If I’m not getting enough sleep there’s no way I will be able to start crawling out of a difficult time. Showering is always a good way to literally and metaphorically cleanse whatever just happened. And how I eat has an enormous impact on how I feel.
Sometimes, reading really beautiful writing is also a good way out for me. Going back to an old favorite essay related to health or rest, like Joan Didion’s In Bed or Robert Louis Stevenson’s Apology For Idlers can help me zoom out and reframe the moment.
What is the biggest thing you've learned this past month?
Watching birds is amazing. My family has been staying at my parents’ house, where they maintain an impressive array of bird feeders. Sitting on the deck and watching the birds come and go is just about as relaxing an activity as there is for me. Especially if my phone is inside and far out of reach. My brain can actually let go for a minute and just chill out among these magical, multicolored flying creatures.
What’s a project you’re currently excited about?
My kids. That’s really my big project at the moment. They are seven months and two years nine months. I never, ever thought I would find myself primarily doing child rearing… my education and goals were never oriented that way. But here I am, and I’m so glad to be focusing on these kiddos during this fleeting moment when they are these ages.
The only other project I really get excited about these days is my Lady’s Illness Library interviews, for all the reasons I mentioned above! It’s slow and steady going right now, but I’m glad to still be adding to the library.
What have been some Tiny Joys lately?
One thing about toddlers is they constantly manufacture tiny joys (and tiny terrors, but that wasn’t the question). Let’s see, what are some moments from the last few days?
Watching him paddle around in the ocean shrieking and clinging to his floaty turtle, who he named “cuddles.” Having a dance party in the kitchen to his favorite song, an obscure electronic song that my husband likes, and him yelling “HERE COMES THE DROP! HERE COMES THE DROP!” When he doubled over laughing because someone said “littering,” and again with the word “flittering,” both of which he finds absolutely hilarious. When he looked me in the eye and said with utmost earnestness, “I’m grateful for my water balloons, mommy.”
Rachel’s Recommendations
The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey
In Bed by Joan Didion
Apology For Idlers by Robert Louis Stevenson
In the comments…
Have you struggled with your own chronic illness? Where are you currently in your journey?
How do you get better at trusting your intuition?
How has changing your environment or work flow impacted your life with an autoimmune condition?
Very thoughtful and insightful…thank you for getting this journey written for others to read.