I can't work nine to five every day and be an okay person
Kathryn Vercillo on depression, crafting for healing, and designing life around our physical and mental needs
Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.
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I couldn’t get enough of this wide-ranging conversation with
, the writer behind Create Me Free, and author of Crochet Saved My Life. Kathryn lives with double depression and a number of symptoms that are hard to categorize. She has spent years researching the role of crafting in healing, and particularly the healing powers of crocheting and knitting for people with chronic illness. Kathryn maintains a special outlook that, for me, is so hard to achieve: being curious about what’s on the next page of her life, even when she is in a moment of overwhelm or loss or confusion.You can find additional resources from Kathryn at the end of the interview.
Key themes from this conversation:
Depression can come with a range of physical symptoms, which are often ignored or dismissed, even by the person with the illness.
Losing productivity can be particularly painful in our culture. And even if we are able to give up our addiction to productivity, we still need purpose. For people with physical limitations, it is important to look for sources of purpose that we can still engage in without hurting ourselves. Crochet and knitting, which are portable, require little setup, have a quick learning curve, and can be used to make gifts, are a great option for many people.
There’s always another page in our personal story. For better or for worse, we won’t be on the current page for long.
Rae Katz: Let's start with the basics. What is your illness or condition in your own words?
Kathryn Vercillo: I wish that was basic. I'll try the concise version: for a long time, I didn't know what was wrong. Then I got diagnosed with double depression, and that felt like a useful frame for a long time. It fits enough of my recurring symptoms, and medication helps enough. Then over the past five, six, seven years, I felt like the depression diagnosis didn’t fit quite as much, but neither did anything else. I have recurring bouts of fatigue and low energy. I’ve got brain fog.
Then suddenly in the last couple of weeks it's been dawning on me that I think I'm in perimenopause. Now I don't know which things are which. I went through very bad depression last year, and now I'm thinking that was more hormonal than anything else.
In short, a lot of depression symptoms fit, and I can use that as a lens for explaining things. But I think there’s more, too.
R: It sounds like you have a number of physical symptoms, but without a physical diagnosis. How has that gone with doctors that you've seen?
K: I’m in my head a lot of the time, and I have to work to be embodied. So throughout this whole time, I've had a lot of physical symptoms that I didn't pay attention to or didn't realize might be related. I’m very achy a lot of the time, I have headaches that come and go—not too strong, but just this constant muscle tension. And then more recently, digestion stuff. I have respiratory issues that have never been well treated–asthma, allergies, nasal congestion that I've just been dealing with for years and years. As more information has been released about "chronic inflammation," I tend to think that's at play in my body. And the more we learn about the relationship between the gut and the brain, the more I think that the mental health stuff I've always called “depression” is also related to all of this.
My doctor just wants to treat each individual symptom with a different pill. I feel like if I take a symptom to them and say, “I think it's this,” they say, “okay, here's this medication.” I am not opposed to medicine—I take mental health meds and I think there's a place for all of it. But it isn’t feeling right for what is happening now. So I am currently looking for a more holistic approach, but how to find that and pay for it and get insurance involved is a big process, and I'm not sure what that looks like.
R: Totally. This seems like a common story.
I'm curious to hear more about your realization around perimenopause in the last couple of weeks—that seems like it would complicate things!
K: What prompted me was actually something very random. I have a dog who has not been spayed yet. So she went into heat, and I saw her heat cycles, and watching her I thought, “oh, her body has a pattern and it changes her mood and behavior in this very predictable way. If I didn't know that's what it was, I'd think she's crazy.” It suddenly hit me. I was like, “Oh, my God, I keep thinking I'm crazy.”
That planted the seed and I started doing research. I don't have hot flashes, but I do have night sweats, and some weird sleep stuff and weird digestion stuff. It kind of all fits, again. Of course, I still don't know—the easiest way to tell if you are in perimenopause is if your period starts changing. Well, I've been on birth control for over 20 years and my period basically stopped in my early 30s. I was younger and going through other stuff, and I just didn't think about the consequences of being on hormones for twenty-something years. So now I'm still on the pill and wondering, how much is that affecting me? What are my options?
R: Interesting. I also find it really odd that I went on birth control unthinkingly at the age of 17 or whatever. There was no discussion of potential consequences at the time. And now it’s well established that female sex hormones impact almost every part of the body, so if you're ingesting them, logically it makes sense that they'll likely have impacts way beyond your reproductive system. So that's just kind of shocking.
K: It really is. So I'm Googling and asking in forums and stuff—you know, perimenopause on birth control, blah, blah, blah. And I keep finding that, according to the internet, you don't know if you're in perimenopause or menopause because the pill is controlling your cycle. So a lot of the advice is just “stay on the pill until fifty-five, because then you'll definitely be in menopause and you don't have to worry about getting pregnant.” After fifty-five there are big risks from being on the pill. But I'm like…um, I’m assuming there are also risks when I'm fifty?
R: That’s so interesting. That approach also completely disregards any experiential impacts of going through perimenopause and menopause. It's all focused on whether you can get pregnant or not.
K: Right. So I'm here trying to figure this out on the internet. I've been on birth control for most of my life. I’m 43. So how much has this played a role? Who knows, right? So yeah, it's a journey.
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R: It's definitely a journey. You've done some notable things to accommodate your health throughout your whole life. I'd love to hear a little more about the kinds of decisions you made early in your career to design a life that works for you in various states of health.
K: When I was younger, I thought I wanted to go into teaching or social work, but really quickly I found that I can't go to a job nine to five every day and be an okay person. It took me years to not feel ashamed about that. I thought I was lazy. I thought something was wrong with me. I pushed and pushed and pushed. But I just physically couldn’t keep going, so I needed to find a way to work alternatively so that I could take care of myself.
I am gonna find a way to give myself permission to be slow, messy, imperfect.
R: Where were you when you came to that realization—I have to do something different.
K: I was in my early 20s when it became clear to me, but it was in my mid- to late-20s when I really admitted it to myself. But I was like, ok, what do I do with this information? It was 2002, 2003, and the gig economy and online work weren’t really a thing. I kept going back to writing because I've always loved it, and I kept trying to figure out a way to make it work. While I obviously wanted to do work I loved, I was ok so long as I had the freedom to create my own schedule and flexibility to adapt to what I needed.
But it's still a constant up and down. Once writing online became a real job, it was great for a little while, and then I was increasingly asked to produce more and more content. And I kept trying and trying, and there were several times over the years that I got to the point where I completely just burned out and couldn't keep going. I would just quit everything, sometimes in embarrassing ways, just like fading out of all my commitments.
And then the project was learning to be gentler with myself. I realized, oh, actually, a lot of the people I know who are making it work feel terrible. Maybe the problem is not just me. But I'm still trying to figure it out financially. I accept a life of a lot of debt and financial instability in order to have the consistency of daily care that I need.
R: You've written really openly and honestly about finances and the relationship between depression and finances. I think that's super rare. It's a hard topic, but it's relevant to every person with a chronic illness and particularly one that involves any kind of fatigue.
K: Yeah, it's a big topic. It's so critical. With depression there's the issue of “I’m too fatigued and depressed to work, therefore I don't have money.” Then there's the issue of, “I don't have money so I'm stressed out so that's making depression worse.” And then there's the issue of, “I feel bad about myself because I am not someone who can make good money and that makes me more stuck in the depression.” And then you end up feeling like, “how hopeless is this if I need to get better in order to make money, but I need to have money in order to get better.”
I’ve focused on a couple perspective changes. I had to learn to define success and what matters to me in ways that weren't related to money. For example, I’m in a really great relationship. It took me a very long time to get there. That's success to me in my life. In my work, success means writing honestly about the topics that matter to me and connecting authentically with others while sharing stories. If I do that and I mostly manage to pay bills, then I'm succeeding. But it's hard to keep focused on that—your own accomplishments and successes that are outside of traditional stuff.
One of the things that has often kept me going is the idea that there is something on the next page of my own story. I don't know what it is, but there's something there, and I can at least be curious about it.
R: You have done a lot of work related to creativity and mental health—using creativity and crafting as a strategy for healing and coping. I'd love to hear about it.
K: In my late 20s when I went through the worst of the depression, right before I got any kind of treatment, I was really just trying to push through. It became life threatening, and I collapsed and could not get out of bed. As I began healing, I started trying to find things I could do that would make me feel better that also didn't require leaving the house, or socializing with people, or anything else too hard, and also didn’t cost anything.
I read somewhere that you might try to do the things you liked to do as a child. I pulled out of thin air the memory that I had learned to crochet with my mom. And I started crocheting—and I can go on and on and on and on about this—but it helped.
R: Tell us just a little of the “on and on,” and a little about why it helped.
K: There's a lot of science on why it helps: there's the repetition of moving your hands, and things that happen in your brain with serotonin release possibly associated with that. My experience was that I felt like I was doing something. I couldn't get away from the feeling that if I was doing nothing, I was worthless. So I had to find a way to do something, and crochet was easy and portable. I could make a gift for someone or I could make a blanket for myself. Our culture tells us: go earn money and do things for society in order to be valuable. I don’t believe in that, but I do believe we all need a purpose. Turning a piece of yarn into something is a magical thing. Using it to create a sweater that warms you or a dish towel that you use in the kitchen is a purpose. And you can intentionally build on that purpose by aligning the crafting with other values - such as making fiber choices that are sustainable.
I ended up spending over 10 years doing deep research into crochet as therapy. I heard from a lot of people who had other chronic illnesses that the sense of purpose really made a big difference for them. A lot of these people were women who had tried to do it all—have a traditionally successful job and have kids and whatever else. And through their illness journey they realized they couldn't do that anymore. They found themselves lost as to their identity and their purpose. Even when they had all the support in the world—supportive family members who were taking care of things financially, or help with kids or whatever—they still felt like they needed to be doing something, and crochet or knitting again gave them that.
R: Totally. I'm also a knitter and I also do quilting. But now I’m realizing that I have mostly stopped knitting in favor of quilting, and I think it’s because I felt like I was too slow at knitting. Which is so classic, right? Like, “I'm not doing this art fast enough.”
K: Yeah, I love that. There can be all this judgment around it: I’m not fast enough, I'm not doing it perfect enough. I noticed this in my interviews and became interested in exploring how we can use the safe space of our craft or art as a place to work through some of the bigger issues. Because it’s likely that not knitting fast enough is related to all kinds of other things in your life that you're not doing well enough.
R: One hundred percent.
K: It's very hard to tackle that in your big, big life. But if you're aware of it, you can say okay, in this one space, I am gonna find a way to give myself permission to be slow, messy, imperfect—whatever your thing is. I think it can be a little microcosm to work out some of our challenges.
R: I love that framing. You wrote a book compiling stories about healing through crochet. I obviously have an ulterior motive with this question given that I'm also compiling stories, but I’m curious why it felt important to tell these stories.
K: First of all, I think everyone needs to be seen and validated. Every single person’s story is unique and meaningful. And so it's very powerful for me to witness someone sharing their story. Often, people come to understandings or realizations about themselves through the conversation that maybe they hadn't like picked up on before.
Beyond that, I think a lot of us learn best from stories rather than Top Ten Tips. Sharing stories of amazing people can help us recognize people similar to us who we can admire and look up to. I hope it helps change the narrative in the larger society of what it means to live well, and to live with illness. But even for people without illness—life is hard. So many people feel like they're doing it wrong. We're all actually doing okay, and so if we can learn from each other and support each other in that narrative, that feels like work I want to be doing.
R: You mentioned grief, which is a big part of chronic illness—grieving your past self and loss of different capabilities. This may have happened a long time ago for you since your illness story started when you were so young, but I'm curious whether there are things that you're still grieving in terms of your own identity and capabilities.
K: I still have random fantasies every now and then of what I'm going to do when I grow up. I went to school to become a therapist when I was in my 30s, and I do grieve this parallel life idea where I'm a therapist. I like that idea. I think I could be really good at it. Except that I can't be good at it when I have to show up as a stable human five days a week, indefinitely, for people who need me. I know that the reality of my health condition is that I need days that I have to rest/sleep/decompress all day and that it doesn't work to plan those in advance so I can't commit to a job where other people consistently rely on me to be present at specific times.
R: Yeah. It's really hard in our culture to feel okay about an appealing life we aren’t having, and not to think “if I had just tried harder, I could have had it.”
Before we go I just want to ask my favorite closing question—given all these experiences, I'm curious how you think about the future.
K: I’m in a weird place with this with the perimenopause stuff, because I suddenly feel old. And I know I'm not old. I'm 43. I have lots of life ahead of me. I'm going through a weird thing around that.
But as a writer and storyteller with depression, one of the things that has often kept me going is the idea that there is something on the next page of my own story. I don't know what it is, but there's something there, and I can at least be curious about it. I am not going to be on this current page forever, for better or worse. So for the future, I'm curious. I'm curious to see what's on my next page.
I'm also nervous because I don't have a good story about aging. My frame is that it's just gonna get harder. I’m stuck with thoughts like, “oh my god, I should never have gotten on birth control. I should have stopped it ten years ago.” I’m not someone who exercises a lot, and I want to become someone who does that for health reasons. But it's hard. So I'm having a lot of nervousness and uncomfortable feelings around that. But I also feel more in touch with myself than I ever did when I was younger. I am hopeful. And the work I'm doing, and the work that you're doing, make me more hopeful because we are all beginning to talk about this more and find new understandings and new solutions and new ways of defining our lives.
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Read more from Kathryn:
Kathryn’s books on Amazon, including Crochet Saved My Life, and The Artist's Mind, which explores the creative lives and mental health of famous artists.
Kathryn’s Instagram: @createmefree
Meet me in the comments
Do you crochet or knit? If not, is there something else that helps give you a sense of purpose when you’re unable to be productive?
Are you able, even on your worst days, to stay a little bit curious about what’s on the next page of your life? What does that look like for you?
I’m so curious about hormonal birth control and perimenopause — share your experiences with both/either in the comments.
"It's really hard in our culture to feel okay about an appealing life we aren’t having, and not to think “if I had just tried harder, I could have had it.” "
I did try harder and I had that life. It still didn't make me feel okay. (If that's any consolation).
Thank you both for this conversation. As always in these Lady’s Illness Library posts, I find common ground with the lady sufferer.
I don’t knit and I’m not otherwise a creative type (except for writing), but I long for a hobby akin to knitting where it’s tactile and distracting and yet mind-softening in all the right ways. I’m addicted to information and that doesn’t allow for a lot of inner expansiveness other than I guess intellectually.