Creative Priorities Redefined with Erica Vipond of A Novel Idea

What happens when chronic illness forces you to prioritize your life’s passions? In this conversation, Rachel Katz interviews Erica Vipond, a fiction writer diagnosed with a nerve-affecting autoimmune condition, to explore how these challenges reshaped her creative priorities. Erica shares how her chronic pain led her to let go of less vital pursuits, like a magazine she created, to focus solely on writing—her lifelong passion. Us type A-s know how hard it is to let go of a goal, right? Sometimes it’s just what we need to do to adjust to a new reality. This is the story of how Erica did just that. 

Erica's info:

• Website: EricaVipond.com
• Instagram: @EricaVipondAuthor_
• Substack newsletter: https://ericavipondauthor.substack.com/ 
• Her book, Starling Darling, will officially publish in October but pre-order announcements will be shared through my Substack in September. 

🔥 Rachel's Substack, Inner Workings: https://raekatz.substack.com/

✨ Ladies Illness Library written interviews: https://raekatz.substack.com/s/ladies-illness-library

🎶Music "Upbeat Defiant Challenge Funky Groove" by Uroboros Music, licensed through Audio Jungle

Transcript

Rachel: 

So many of us today have a collection of hard to diagnose symptoms, random fatigue, gut stuff, skin things, and these often alter the course of our lives. Here, we're trying to bring those stories into the light and learn from them. 

I'm Rachel Katz. I was a super ambitious young woman. I started my career at McKinsey, and then I started a company and ran it for fun. Five years as CEO before selling it. During that journey, I developed a range of health issues, including an autoimmune disease, anxiety, infertility, fatigue, and endless gut issues. I'm curious about it all, and I'm curious how my story is similar to others and how it's different. So that's what we're doing here. We're exploring these stories, my Substack Inner Workings, and this special segment, the Lady's Illness Library, can be found at raekatx.substack.com. 

Today I'm talking with Erica Vipond, a fiction writer who was diagnosed in 2020 with an autoimmune condition that affects her nerves. This causes shooting pains and loss of sensation in various parts of her body. Erica is someone who's uniquely able to reflect on her condition and how it's changing her, even while slogging through the thick of it. In our conversation, she talks about how the chronic pain forced her to hone in on the most important things in her life, how writing forms the basis for meaning in her days, and how it's all very messy. Erica's first novel, Starling Darling, is due out this year. You can read more about Erica at ericavitbondauthor.substack.com. you wrote this line in one of your Substack articles. You said, daily chronic pain shows you what you really love. I shed daydreams and wishes and focus on one thing besides my health. I write. And when I read that line, I was like, whoa, that is so intense. It's so real, hardcore. It's tragic. It's all of, it's hopeful. It's everything. So, yeah, I'd love to hear about that reality that you're in where you've had to shed all of this and do one thing.

Erica: 

Yeah, absolutely. I think what's most interesting about you picking that line is that my feelings behind writing that particular newsletter, that particular line, it totally encompasses all the things that you're talking about, which for anyone in the chronic illness sort of community, anyone who's honestly human, you experience hope and sort of the tragedy of not fulfilling something. Your aspirations, your dreams, all of that. You know, I feel very intensely, both as a person and also as someone who tries to articulate it as a writer. You know, for me, the beginning of, I would say, the sort of grief that I've worked through the last several years really begins with my medical diagnosis. So my particular condition is CIDP, which stands for chronic inflammatory, demyelinating polyneuropathy, which is a mouthful, really slides off a ton. It's really not a very quick and easy thing to, like, explain. It is like an autoimmune disorder function. It is a neurological disorder that, for me, particularly impacts my nerves, the myelin around my nerves. So what is supposed to protect my nerves? 

And, you know, everything happened really quickly, and we can definitely dive into that. But in particular, to what you're talking about, what you're asking, I think that for me, my chronic illness, you know, I'm often dealing with chronic daily pain, and I do often have to choose. I would say that's, you know, it's a whole foray into identity and having a chronic illness. And what does that mean? And there's just a struggle, and there's also this optimism that I cannot seem to get rid of. I I just want to. I think Beverly, who I used to be, and that isn't reality. And so there's often this tension for me, the struggle of, like, giving myself grace, of I am not who I used to be, and that is okay. And, like, who I'm becoming sort of being in this place right now of a lot of changes, a lot of sweeping changes. Creatively, personally, medically, I think, is really hard to. It's sort of like taking the temperature of, like, the weather. Right. You're in the process of kind of working through it. What does it mean? 

You know, for me, I actually just folded a magazine. It's called Ciao Magazine. And it was, you know, such a dream for me to create and publish this publication that was based around women's stories of belonging and travel and style, you know, the things that I myself have very big interest in. And I actually literally just folded it like, a week and a half ago. Like a week ago, because I realized I had to choose. I am a writer. I am publishing a romantic suspense this year. I cannot do both and take care of myself and attend to my appointments, you know, so. So for me, there is all of that right now. And I believe, you know, in general, having an illness. Having an illness to manage.

Rachel: 

Yeah, it's interesting because everyone has constraints, even fully healthy folks, and chronic illness just seems to put it into such clear focus. And that's why I thought that line was so interesting, because you honed it down to one thing, writing. And that's because you had to. And I'm curious. Yeah, I'm curious. What about writing had such a strong pull for you? Why did that end up being the one thing?

Erica: 

Oh, gosh, that's a great question. You know, it actually really begins in my childhood. I actually started keeping a journal in 8th grade. I'm sorry. When I was eight years old, when I was in third grade, and there was, like, a scholastic book fair, and it just so happened to coincide with seeing Harriet the spy for the first time. And I just loved it. I was like, I want to keep a notebook, and I want to write down observations about people and places and things. You know, that I. And that was, you know, I'm 37 now. I almost just aged myself 38, but I'm 37, and that was almost 30, like, years ago. So, for me, writing has always been this way that I kind of come back to center, a way that I tell myself the truth about something, the way that I process things. So, for me, writing is, you know, it's. It's just who. It's just who I am, honestly. It's what I've always done. I have. In my, like, hall closet, I have probably, like, 140 notebooks, 140 journals just kept over time. I still keep journal. It's, um. It's the most consistent thing I've done. So for me. So, for me, writing is, like, there is no other way to kind of move through this life. And I think what has changed as I've gotten older is I have the wisdom now to recognize, like, oh, this isn't just, like, a. Like, a random, like, innocuous hobby. As you know, some of my family was like, you're not gonna. You're not gonna keep this journal from the scholastic book fair, whatever. There's a little bit of that, you know, will, watch me. I'm gonna do it. So. So that is kind of how it started, and now it's become who I am and how I. How I process the world.

Rachel: 

That story resonates a lot with me. It's a similar way that I feel. I was a little leader to start, but I started journaling as a junior in high school because an English teacher assigned us three pages of journaling a week. And I was like, I hate this assignment. I slogged through it, and that assignment, the physical journal that we used, was one of those marble composition notebooks. And I still have my journal in a Marvel composition notebook. So similar. Like, I've done all this other stuff, but I always come back to the writing and the journaling as the way to process. And I think a lot of the folks I've spoken to in this series have writing as some part of their life, and it kind of pairs with chronic illness.

Erica: 

It's really, writing is such a thing done in solitude. But I, to me, it doesn't ever feel like that. It feels like I can connect with myself, and that actually allows me to connect with other people, because once I can articulate something and explain it to myself, then I can better say something that I think is universal, that people will also understand.

Rachel: 

Absolutely makes sense to me. I'm curious then, what were the other really important elements of your life that you had to cast off? So you talked about this magazine, which sounds like it was writing adjacent, but that activity of starting a magazine is mostly not writing. And so it sounds like you said, no, I just. That's not writing. And so what else?

Erica: 

Oh, gosh. Yeah. I mean, the magazine was just to touch on that for a second. Writing is a huge part of who I am. As I just mentioned, you know, I was also a commercial and wedding photographer for, like, 15 years. So for me, the two kinds go hand in hand. And I think just over time, gradually, you know, as we, like, sort of evolve as people, as women, I realized I wanted to just focus more on writing, focus more on that. And I'd always wanted to write a book. And so the magazine was something I definitely had to sort of relinquish in terms of choosing, like, how, where my energy will go in terms of creative projects, photography, kind of sometimes also that, you know, what happens with or for me, my experience with my condition is that I have a lot of sensory dysfunction. You know, I also struggle with balance. So there are things that I, I've had to sort of acknowledge I cannot do as often as I would like. One of those things recently, I've. I've kind of realized is running. You know, I have, you know, this constant nerve pain. You know, sometimes it's an electrical sort of stimulation, feeling like lightning in your. In your body at random times. My hands and my, and my legs, you know, I have, it's called paresthesia. So that constant, like, pins and needles sensation. Running is just a really difficult thing. I did do it recently for the first time in probably, I don't even know, three, four, five years. And that is something I would like to do, but that is definitely another thing that I feel like I've had to sort of come to accept. Again, I am not who I used to be, and I have to make accommodations for myself of what I do think I can accomplish as much as possible, given the sort of daily pain management.

Rachel: 

Do you feel like at this point in your journey? I hesitate. I'm trying to figure out how to word this question because I. I don't want to fall into kind of like a hero's journey, you know, like bias. But I'm curious if you feel like any doors or windows or cracks of windows have opened as a result of all these shifts, because obviously a lot of doors closed.

Erica: 

Yeah, yeah, yeah, yeah. I mean, so. So your question is, is there anything like. Like an opportunity or conversations that have occurred post diagnosis with my medical condition?

Rachel: 

Yeah. Or a mindset shift or. I mean, one that comes to mind immediately? For me, I'm not sure if you view it this way, it is like the focus on writing. You know, it's actually really hard to choose the one thing that matters and do it wholeheartedly and get rid of all the flags, you know? And I'm not saying that I would. Anyone would want to be forced in that way, but I'm curious whether that or something else, some other element of this, seems like a new window opening that you hadn't imagined before.

Erica: 

I think, for me, what has opened up is really specific to my decisions of who I surround myself with and the kind of relationships that I can have, that I can maintain, that I can cultivate. That has definitely changed. So, you know, what's for me, what's really challenging about my condition, beyond all the pain and all the doctor's appointments and infusions, is I'm an extrovert. That's really hard, like, wanting to connect with people and being like, I'm just freaking tired. I am tired. I cannot give. And what has come out of that is I have an amazing husband. I have amazing friends. There's a small group of friends I've had and known since we were teenagers. There's, like, a small group of us. I mean, what my illness has demonstrated, what it has opened up and revealed is I have people who are not only, oh, I understand, but who are checking in. Hey, how's your pain today? You know, there's that spoon theory of, you know, kind of managing or measuring your energy by spoons.

Rachel: 

Yeah. Why don't you just give a brief overview of that for any listeners who don't know it?

Erica: 

Yeah, absolutely. So spoon theory is a metaphor. So say, you know, as an example, it's a way to measure your time or your, your energy that you can give. So I measure my day by, say, twelve spoons. Some days especially, like, I just, I wake up and I know and I'm like, man, my pain is at a six. I then have to sort of navigate, how am I going to manage this day? I've got a job I have to do. I have a dog I have to take care of. I have to feed myself. Sometimes taking a shower is three spoons. Okay? So then that leaves me with, you know, the rest. And then making breakfast is another two spoons. Some days are better than others. Some days are not. So for me, this, like, having this language that I've given some of my friends, they'll be like, how many spoons do you have today?

Rachel: 

Amazing.

Erica: 

And that is just the biggest gift because let me tell you, and I'm sure so many people will understand that there is this feeling of sometimes it's more. It's just as exhausting navigating conversations with people who are, who lack maybe empathy or curiosity and willingness to understand your condition, just as hard as it is to manage the condition itself. Totally, you know, and I feel very grateful that I have people who do check in who ask me, how many spoons do you have today? And I'm like, thank you so much. I do not have enough. I do not have enough today. You know, in the days that I do have more, they're like, hey, let's. Do you have the capacity to do a call? Do you know, how are you? Let's talk. Let's do whatever fills my mind. Fill my buckets, my cups.

Rachel: 

That's really beautiful. And I think that, yeah, it's not something that everyone has. And I think that's. It's an incredible, like, gift and also just a testament to, obviously, the relationships you've built before this all hit and how that can be almost a safety net in itself.

Erica: 

Yeah. You know what's really funny, actually, just real quick as a quick aside, my best friend does this a lot. She'll say, I'm just so glad you told me about this spoon thing. She was like, because I only have, you know, four spoons left today, you know, and she's like an able bodied, like, healthy person. But I'm like, I think that's great. You know, I think that's a really good language for other people to just have for themselves. Checking in.

Rachel: 

Yeah, I think it's something. Yeah. In our culture that we don't teach. Teach kids to evaluate how much energy I have to give this thing? And therefore I'm gonna, you know, push or not push. And this is. This is something I've actually been thinking a ton about recently, is how much to push in all different various ways in work and creativity, physical pursuits like exercise and so on. And, yeah, I'd just be curious, kind of, as it relates to that, what your average day looks like these days. So you're a writer with a chronic illness. Maybe there is no average day, but it sounds like, you know, you wake up, you're thinking about how much energy you have, your number of spoons, and, you know, what does that day look like? And kind of when. When do you decide to push? Or is it a never push situation or. Yeah. How do you think about that day by day these days?

Erica: 

Oh, I love that. Yeah. I mean, every day is so different. I think my journey since being diagnosed in 2020, my journey that I have sort of come to this realization of learning that every day is going to look different. And what I've tried to do is actually remove should from my vocabulary. So what I do is I evaluate, you know, my goals well. I think I do need to move my body. I want to get some coffee. You know, I do have little routines that I sort of modify, but generally say it's like a. I'm gonna say there's not really an average normal day, but say, like, today I woke up and, like, my pain level this past few weeks has actually been pretty high. It's been like a. Like a six some days, a seven out of ten. And today I woke up and I'm like, it's like a four. I can get out of bed. And I get out of bed. I do my skincare routine. I take my dog out, I feed her, I make myself coffee in and around that, and I stretch for, like, five minutes. You know, there was a previous episode that someone was saying, I think she's an author. She was talking about meditating. Like, meditating was, like, not for her or something. And I love that. Like, giving yourself permission really removes the mental gymnastics around what we think we should do. 

So on the, you know, the better days, if you will. Like, yesterday was an okay day. I actually woke up really early in pain, of course, but at some point, I was like, do I want to toss and turn in bed, or do I just, like, want to get out and do something? And, you know, it really, really hearkens back to, like, this conversation around identity and chronic illness. And for me, I was like, I'm going to make lemon streusel mini muffins and make myself some coffee and. And, like, being in the kitchen and baking and cooking is actually meditative for me, like meditation. So I did that and I had my coffee and I just feel like those are the moments I feel most like myself, and those are the good days. And that's before work. Right. So it's. And stretching and everything. And then the bad days are when I'm going to get out of bed. I'm going to feel proud that I brushed my teeth and did my, you know, four step skincare routine. And I'm. I'm just going to go through my day and this is. I'm just going to have to get through it. And sometimes it's minute by minute and sometimes it's hour by hour.

Rachel: 

Yeah. So it sounds like for the most part, you're trying to walk this line between, you know, just saying, oh, I'm tired, I'll just lay in bed. And the other end of the spectrum, which is I'm tired, but I'm just going to go through my routine exactly how I planned. And it's kind of this middle ground that's like, I'm tired and in pain. So what could I do reasonably that would make me feel good? And that is a hard tightrope to walk.

Erica: 

Yeah. I mean, it is a matter of, like, pushing myself. And I used to practice yoga, like, religiously. It was, like, my only religion. And I bikram. He would, like, kill me now. Like, I do not do well with heat. I sleep with a cold pack every night at my feet because of that paresthesia, like, burning sensation that helps me sleep. So for me, it's like, I acknowledge as, like, a learned lesson through yoga, through the years of yoga. Sometimes you just have to listen to your body and say, nope, not today. Not today. And that's. That's okay. You know, it's really like having to give yourself grace. It's hard. It's really hard.

Rachel: 

It is really hard. It's like something that comes up in every single conversation, and it's like, why is this so hard for us?

Erica: 

Because I really think it's. For me, I believe it really has to do with grief. It's like I, you know, depending on when a diagnosis occurred. Like, for me, it was a little bit later. It was in my, like, I was 34 when I was diagnosed. So for me, it's like I'm struggling to let go of this person I used to be who could do all these things. Who was like a busy body, right. Just kind of like doing a lot, packing a lot in my days. I cannot do that. It's not, I don't have that endurance. It's not sustainable for me.

Rachel: 

Yeah. Yeah. So let's go back there. Let's talk about your diagnosis. So what was going on in your life? It sounds like it was three or four years ago. Yeah.

Erica: 

It was 2020.

Rachel: 

Yeah. What was happening? Well, we all know one thing that was happening.

Erica: 

Yeah. Talk about not a great time to need to go to the doctor a lot and get some sort of help. Yeah. So everything actually happened really quickly, both in my symptoms and in my diagnosis, which I will dive into. So my symptoms, no joke, started October 1. And it's very easy because it happened to be the first day that my insurance kicked in for my team job. I kid you not, I was like, of all days, I went to the Erde, I was losing sensation in my thumb. And then it kind of went through the day, as I was going to the ER, it stretched to my leg, it continued to my forefinger. And the doctor, I forget what she said. It was something it is, but she kind of. It's something similar to carpal tunnel. She was like, you're going to be fine. Come back in a week if it's persisting. Well, it persisted. The next day, I lost complete sensation in my left hand. That was really scary. That was really scary.

Rachel: 

So scary.

Erica: 

I have generally been a very healthy person. Used to, like, pride myself and like, I am never sick, but when I was sick, I would say kind of reflecting back, like, foresight, right. I would be sick for extended periods of time, like a flu for three weeks, you know, but then not, but like only once every two years or something. So, you know, you forget about it. You go about your life. So with, with my symptoms specifically, I kept getting this question about my medical stuff, and I had insurance for really the first time because I was freelance for so many years. And then I came in the next day after I was losing sensation, my entire left hand. Then I saw a different doctor and he said, I really think we need to do some testing. So I'm experiencing further, like, progressive weakness, like numbness in my body, in my hand. I see a specialist, I see an orthopedic surgeon and he says, oh, it's carpal tunnel. We're going to do a little surgery. It's going to be super easy. Let's do this. I said, well, is there a way? Because I've never had surgery. I was like, is there a way to really confirm, is this carpal tunnel?

Rachel: 

Wait, that is crazy. Sorry. I just feel like, okay, let's do surgery.

Erica: 

Absolutely. Absolutely. You know, I would say for surgeons, I understand that they look at the world in a very different way. They kind of see, like, everything's sort of like a nail and there's a hammer kind of thing. So I said, you know, and this was sorry to, like, interrupt my own story. Medically, advocating for yourself is hard.

Rachel: 

So hard.

Erica: 

It is a whole conversation that I will not divert at this moment. But it is really hard to go into a medical office as a female by yourself when statistically you're already not going to have the most positive experience and you're generally going to be disbelieved. It's a higher standard of proof that is required.

Rachel: 

And then, especially if you have a surgeon who's the top of the medical hierarchy for whatever reason, very confidently, I had this happen. I was so confident I had a chronic foot. This is me interrupting your story. But my first experience of chronic pain was a chronic foot issue with a joint in my foot in my twenties. I was in my early twenties. So what did I know? And I went to this surgeon who did the foot surgery for the San Francisco ballet. And what surgeon could be better than that first appointment? He was like, yep, you need surgery. I was like, okay, cool, you're going to fix it. And in retrospect, it's just so easy because. And then after the surgery, to your point about hammers and nails, I was like, okay, can I get a referral to a PT? And he literally said to me, physical therapy doesn't matter after surgery. It's just mechanical. It either worked or it didn't.

Erica: 

It's like, what now?

Rachel: 

You know, 15 years later? I'm like, that makes no sense. But anyway, point being, that was why I had that reaction when you said so. I went in, they said it was carpal tunnel and you should have surgery because it's just like, still insane to me how quickly that when you go to a surgeon, that can be the conclusion, and then it is totally 100% on you, to your point, to question that. Otherwise you're it and your body cuts open.

Erica: 

Yeah, I mean, I'm really glad you shared that story. I think so many people, women, I believe, experience that a lot. And, you know, what I have learned over the years, and literally learned as I was going through this process, is that they are like medical experts. Absolutely. I am not a doctor. I am relying on them and their expertise, but I am an expert of my body. So that is what I came to the conclusion of as I'm going through these appointments. Orthopedic surgeon says, hey, let's do this carpal tunnel surgery. It's so easy. Don't even worry about it. And I said, what's a good test we can do to confirm it's carpal tunnel? And he said, well, if you really want to, luke hemming and hawing legitimately. And I said, okay, well, let's do that test. And it's an EMG, which is, a, gosh, electromyography.

Rachel: 

Some kind of imaging.

Erica: 

Yeah, it's a nerve conduction test. So I had that. And I had that done. It's super painful. It's like, especially when you're already in pain. And keep in mind, like, my symptoms are progressing. I am not able to sleep. My foot is, like, burning at night. My feet, my legs. I'm losing sensation. I was chalked up.

Rachel: 

The carpal tunnel. I'm sorry.

Erica: 

Absolutely. Absolutely. So the sort of chronology of the events is I go to this to do this EMG, the neurologist who does it, you know, it's like an acupuncture sized needle, but they're sticking it everywhere. Like your hands, your palms, on the other side of your hand, the outside of your foot, underneath legs, calf thighs, everything. And they're really trying to determine what's the response rate for this, like, nerve being, like, poked, basically, like the muscle being probed. And immediately the neurologist is like, you do not have a carpal tunnel. So I returned to the orthopedic surgeon, and I, to this day, have never seen a doctor in such shock. He was like, I really. I really thought he never apologized, but he definitely was like, I could see in this moment. 

I wondered later, is this going to be like, am I going to be the patient where he realizes, like, maybe I. Maybe I encourage and support emgs a bit better prior to any sort of carpal tunnel procedure. So that was that look on his face. And then I lost sensation on the right side of my face. And so then my PCP refers me to another, like, neurologist. And, you know, I was so set on seeing a female doctor because I was like, a woman will understand. And what I have learned about doctors is that regardless of gender, there is that higher burden of proof for patients to say, like, I am experiencing this. I told her I was losing sensation in my, like, I still didn't have sensation back from my hand. My left hand losing sensation in my right face, got all these, like, spots around my body where I'm, like, having this sensory dysfunction. And she said, okay, well, let me write you a prescription. And she wrote me a prescription for Percocet, and I am, by the way, a giant baby. I don't even like taking Advil. Like, I was like, why are we? Why? Why are you prescribing this to me? And I had to really push on that appointment, and I said, no, like, what is a different way that we can find out what is going on? What is Percocet going to address for my symptoms? 

And so she, like, ordered an MRI. I finally did that. You know, I did a lumbar puncture, found a different neurologist, turns out. And then that's when I got my diagnosis. And all of that was October 1, right? First day of the symptom, like December 9 of 2020. And I only later found out that that was really quick. I later joined the CIDP GBs, like the yarn barre. Like, what is it called? Support group. And many people were saying, like, they had to push for years for their doctors to even order these tests. You know, it's really scary to think, like, if I wasn't really, like, annoyingly persistent, I don't even know that I really want to consider an alternative world of how it would have played out, because people with my condition, you know, oftentimes because of the weakness, because of the nerve pain, like, end up in wheelchairs. So.

Rachel: 

Yeah, I mean, it's like. It's so crazy, because I've. I've now read the books and heard the story, you know, the books about women being ignored, you know, doing harm, being kind of the foundational text on this these days. But if anyone is interested in the topic and wants to be really, really angry. Doing harm by Maya Dusenbery. But. And I've heard this story every time I speak with some version, and it still really shocks me. It's still, like, so shocking. I don't know. I just. It's hard for me to kind of understand how this can keep happening and how it's like, how could someone sit across from you or anyone and look at your face and. Yeah, I don't know. Anyway, I just. I'm at a loss.

Erica: 

I want to actually touch on that because I completely agree. It's baffling. It's terrible. I would say to your question earlier, one of the things that has come through the sliver of, I guess, good for my diagnosis, I can advocate for myself. No problem. Now, I was so scared and timid and like, okay, you're the doctor. Like, absolutely. I lean on your expertise. Now I'm a little bit more like, questioning of, like, okay, but what about this? And it does require an exactitude that should not be a burden for patients and for people who are not well. I keep a spreadsheet of every conversation I have with insurance and my doctors, like, post appointment, because otherwise I forget I'm fallible. I'm a person. I'm a human. And I think that that is the best thing that's come out, which is I have learned to advocate for myself and really encourage others to advocate for themselves when they feel like, am I crazy? Like, oh, I guess it's not that big of a deal. It's like, again, like, you are the expert of your body.

Rachel: 

Yeah, I think that's important to remember. It's so easy to just override our own kind of sense of what's going on. Or intuition.

Erica: 

Yeah.

Rachel: 

And then, yeah, as soon as you go in and if you feel annoying, you feel like a naggy, that naggy patient, you know, it's like, oh, you're one of those people who looked stuff up online, you know, it's like you start, at least that's how I feel, you know? But to your point, the more you practice, the more, the more you could just go in and.

Erica: 

Yes, yes, yes. And I've made so many sweeping changes with this sort of, like, ability to advocate for myself medically. I had a doctor. Yeah, I had a doctor. Not my current neurologist, he's former now. But I was losing sensation in my calves, and I was, of course, like, terrifying. And this is after years of infusion. So I'm like, okay, what's going on? What do I need to change? What needs to improve? He looked at me in the appointment and he said, well, do you cross your legs a lot? And I was like, what does crossing my legs have to do with losing sensation for prolonged periods of time? And I was really upset and I was really scared because I was like, this is a doctor who's not hearing me. And I immediately changed doctors. And to be candid, for specialist appointments specifically, I no longer go to them alone. I bring someone because I'm like, I am taken so much more seriously when there's another body in the room. And that's like, that's terrible. That's such an inconvenience.

Rachel: 

It's like, you need a witness for this.

Erica: 

Yeah, absolutely.

Rachel: 

Yeah. Okay, well, you know, we've been talking about when you were diagnosed, and I know earlier in our conversation, you said, oh, before this, I was such a busy body. Also, it was Covid. And, you know, it was a very stressful time. And, you know, it's a. This is a conversation that I think is so nuanced and. But luckily, I always feel like the guests on this podcast are up for it. I'm curious how you think about the relationship between stress and your illness. The reason this is a hard topic, obviously, is just to say it really point blank is, you know, throughout history and today, we women are diagnosed with being stressed, and that's the cause of all our ills. So that is not at all what I'm suggesting. And yet I do feel like a lot of folks, myself included, wonder about and see correlations between the stress in our lives and these types of illnesses. I'm curious how you think about it.

Erica: 

Sure. I would say specific to stress and how it impacts you, you know, especially if you have an illness. For me, I'll speak about my experience. It's very obvious to me if I've felt very overwhelmed, like, stressed. I'm talking, like, adrenaline, cortisol dump. If there's a crash after. I am so, like, fatigued is such an underwhelming word to me.

Rachel: 

Yeah, we need to invent a new word for that.

Erica: 

It's such an understatement. You know, I haven't had anyone say this to me personally, but I know in the illness community, disability community, having people say, oh, yeah, I've been tired, too. This is not that. This is. I am struggling to sit up and I cannot control it with coffee, right. Caffeine. So stress, to me, is a huge component of something. I have to be hyper, I guess I hate to say this, like, hyper vigilant about really removing aspects of my life that are stressful. I haven't really had to do this, but, you know, removing, say, like, people in my life who. Who really disbelieves my condition thinks, oh, we'll just cut out sugar. Like, that conversation brings me stress. Like, cut out sugar, and I'll reverse my condition. No, thank you. So there is science, right, that backs how much cortisol is in your body and how that impacts and, you know, cultivates, like, inflammation, you know, in your body, which is generally, that's just such a huge component of illness, right?

Inflammation in the wrong places, prolonged inflammation. So I try to reduce stress by self-regulating. I actually. I feel like it's so important to talk about this. For me, I've had the same therapist for about ten years and it just so happens this was before my diagnosis but it just so happens that she specializes in chronic illness and disability like I'm not religious but it was one of those moments where I said man I am so grateful for you. I am so glad that this worked out this way and aligned in such a way that like that has honestly been such a reducer of my stress having a place with someone who's a professional who has this experience with other clients and patients who have the stress depending on living conditions, depending on what resources you have. So as privileged as my life is really being cognizant of stressful factors, work, what I eat, not putting undue stress on myself like that should conversation it's like on a scroll in my brain removing that helps honestly a lot.

Rachel: 

Yeah that makes a lot of sense. What luck with the therapist.

Erica: 

Yeah, she's incredible.

Rachel: 

Yeah, yeah and I'm curious because you know a lot of these are actions that you can choose or not to take. You know, what to eat, how much to push yourself, do it, do it, you know, shoulding all over yourself as.

Erica: 

I say for sure.

Rachel: 

And so obviously I'm sure that you're not perfect and I'm curious how you manage self blame, you know when you're not able to perfectly eat the right diet and do the right amount of stuff and you know do just a little bit not too much and all this stuff because striving for that perfection is its own like stressor too. So yeah I'm curious how you manage that.

Erica: 

That's such a, there's so much that comes to mind when you ask that because it's, it's, it's really complex. Right. So I think I struggle with my condition. Sometimes I shrink and my illness becomes all that I see. So I think for me, you know, and I'm so sorry. I know I mentioned this before but sometimes like with my brain fog and this is something I was talking about my therapist, I was like I am so afraid of losing my train of thought because it's that should conversation. I need to be like a quote unquote normal person and that's just not my, my life looks very different. So I am going to have to ask if you can bring me back to the question because I. It just completely went out the window.

Rachel: 

Totally. But you know what's so interesting is like until this moment when you said that like I never would have guessed that there was anything off, you know, like you are doing a great job, you know, covering it up, which takes a ton of energy, too. And also, I bet if you had just kind of kept blabbing on, like, you totally, like, covered, you know, covered, which is interesting and important because it's, like, it is possible to do, but, like, why? You know, like, it's not.

Erica: 

I mask a lot, you know?

Rachel: 

Yeah. So I think it's awesome that you're like, oh, wait, what was the question again? Because honestly, almost anyone at points loses a train of thought. But I think it is interesting that I don't think any listener would be like, oh, wow, she totally can't stay on topic. I mean, in fact, I had a number of moments where I was like, oh, she's bringing us back to the question I asked.

Erica: 

Anyway, so appreciate that. I had a conversation with my therapist about this yesterday. I was like, I am so nervous about losing my train of thought and having this brain fog just take over. She's like, what if you're just honest about it?

Rachel: 

Yeah.

Erica: 

I'm like, what a concept.

Rachel: 

No. And isn't that the thing, too? Like, that our whole culture could be a lot more forgiving about stuff like that? I mean, the reason we're so hard on ourselves about it is, like, I guess that's what we look around and see. Like, we can't lose our train of thought at any moment. It's, you know, God forbid it happens on a recorded audio pressure. Yeah, I think that's. Anyway, I think that's it. Thank you so much for saying, and I'm glad you just said, hey, what was the question?

Erica: 

Yeah, thank you.

Rachel: 

But, yeah, we were talking about it. And I'm, like, now looking at my notes. Oh, I have that in front of me. Yeah, we were just talking about self blame and. Yeah. Which is so great.

Erica: 

It actually is on topic, I suppose. Yeah.

Rachel: 

Like, you know, I think it relates to a couple things. One is this idea of stress in your life, and if you have stress in your life, I guess I'll just speak for myself. Like, a lot of times, I'm like, if I do something that stresses me out and then I crash or I get sick and then I add to it by being like, God, I should have known better. That was so dumb. You know? And I'm curious if that happens to you and kind of where you're at in that journey and how you manage it.

Erica: 

Oh, okay. Yeah, this is great because it goes back to this. Like, I'm in the middle of some changes. You know, there's an acceptance, you know, because of the vision I have. I would have, like, pre diagnosis Erica is, you know, I've been studying French for a long time. I lived in France for a time. I have had to relinquish that part of me, if I am not that person. I can't travel as much as I would like to. I have monthly infusions three times a month, every four weeks that are several hours at a time. I try to keep that in mind in terms of the dialogue, the inner dialogue of self blame. I am just a person who has to have three to four medical appointments every month. At least. The self blame talk has really manifested itself in a sort of one word summary of failure. And I've had to really, like, redirect or, you know, change them. Change the way I talk to myself about what I think failure is and what I think success is. Successful day. 

As I mentioned earlier, some days it's just like I'm getting out of bed, I made my coffee, I took care of my dog, I'm doing my job. Like, that's the day that I'm having. I, on my ideal day, would, oh, my gosh, like, stretch and maybe do yoga for 1020 minutes every day. I would practice French. I'd listen to my favorite French podcast. You know, I'd do that for an hour if I could. I would practice piano. You know, there are all these things that I feel like I've really had to navigate the conversation with myself of, like, what is blame? Blame is what is it? Is it really a failure? Is it really, like, an honest conversation of, this is just what I can achieve today, and that is so difficult and honestly, sometimes impossible. It's very messy. It's very messy. It is not this tidy me, like, like, I'm having this conversation with you after four years of having this condition to manage. So the conversations with myself have really, like, progressed and evolved over the years, but self flame is. That's a really tough one, because from what I said earlier about, like, identity, it's. It feels like a failure of who I am if I don't accomplish what I want to do every day.

Rachel: 

Well, I mean, I'm a major to do Lister, and that's the same. That's not a good. Not really good habit when you are in this state, but, yeah, I love that you said, it's just really messy. I mean, I think that's kind of one of the conclusions generally about these journeys and just life in general, but.

Erica: 

Yeah, definitely, definitely.

Rachel: 

But I've said about these journeys, like, I think probably you resonate with this, too. But I really got enthralled by this idea that, like, we've tried to apply the hero's journey to illness, you know, as a culture, and that these journeys don't fit into that. It's not a, you know, girl who sets out on a journey and encounters a dragon and eats the dragon and saves the prince. Not that that story has really ever been told either. Anyway, It's really just messy. And people say circular, but. But that might even be too neat sounding for what it really is. More like just a scribble on a page a lot of the time. So I think that's really a really, you know, important point, to reiterate. It's just, it's messy. The conversations to ourselves, blaming ourselves, are messy. The phases we go through in this self talk are messy. Yeah.

Erica: 

Yeah, absolutely. And I, and I really think this is, for me, it's really about identity and who I am is changing. And, like, everyone. Right. It just illness puts a bit of a different spin on it, you know, so sometimes maybe accelerates it, like, absolutely. You know, so I'm often, like, redefining what my identity is with, with my condition. You know, I have to ask myself, like, am I seeing my identity, like, through the lens of my illness or my illness to the lens of my identity?

Rachel: 

Can you say what each of those looks like?

Erica: 

Oh, gosh.

Rachel: 

Or maybe I can try to articulate what I think you mean. Yeah. So if you're looking at your illness through the lens of your identity, then you're saying, like, is that, like, I'm, you know, I'm an, I'm an active person who does all this stuff and my illness is keeping me back. Is that the idea?

Erica: 

Yeah. And really, I think the conversations that I have with people also look different, and that impacts my identity. What should I do? What are my belief systems? Who are the people I surround myself with? Sometimes I begrudge, you know, am I a person with an illness or is the illness all of me, and I'm just this shrunken person in the middle as it's, like, enveloping me? I think that's really more what I'm saying when I say that, because I have some, some days, some weeks, there were months where I felt like I am just a person who is sick, and that's all people can, can see. And that felt terrible. That felt, that's that messy.

Rachel: 

Right.

Erica: 

So, like, navigating that conversation with myself of who am I with this illness and what are the conversations I'm having with myself? And what are the conversations I'm having with other people?

Rachel: 

Yeah. So we're coming to the end of our time, and I'd really love to make sure we touch on the work you're doing, the writing you're doing right now. So I know that you're currently working on a young adult fiction series. In addition to the book you have coming out this year, I believe you are also working on a young adult fiction series about a girl with a chronic illness, which sounds pretty relevant to our conversation. So, yeah, I'm really interested in that. It's something I wish I had had more exposure to when I was a young adult, because I had never had exposure. And then I got chronic pain, and it was horrible, and I felt really alone. I'm curious, like, how you're approaching that, because chronic illness can feel like such a foreign concept to young adults. And I'm interested in what message you're trying to convey through that young adult fiction. It's, I think, just an incredible project.

Erica: 

I could talk about the books I'm writing for far longer than the time we have, because let me tell you, I. So my book, Starling Darling, is coming out this fall, and that is a romantic suspense. Adult romantic suspense. But I actually already finished my second book, and I've actually been working on a third book, which is romantic. So those are the projects behind the scenes, just so you know.

Rachel: 

I mean, that's incredible. You're the second person I've had on this podcast who has a book coming out and has two more books in the works.

Erica: 

Yeah.

Rachel: 

What is it with us people got?

Erica: 

Yeah. Yeah. So. So I had already been working on these projects, and this relates to the point of the. The YA series, which I will definitely explain. But I was already working on this, the second book, which is another romantic suspense, and the third book, which I. Is romantic, romantic fantasy. And I was, like, very excited, and I am. It's like female rage, and it's. And it's sort of like a count of Monte Cristo meets magic. I'm, like, so excited about it. I've been working on it. It literally just finished the entire outline for the first book. Cause it's duology. And then one day I wake up as one does. And the way I write books is the way I come up with the concepts is I wake up and I wake up, and, like, I see a movie. Like, that's how it is. Like, some people sort of wake up and they hear a voice or they think of words. I see scenes, and I think that's the photographer in me. That's the visual person in me, the visual oriented person. And this ya series came to me about a young girl in the northeast who has, like, a very scary diagnosis, and she's young, and how does she navigate, you know, conversations with her peers, being othered, you know, that's the thing that happens throughout life. But it is particularly, I think, felt, acutely felt when you're young. 

And I think this idea really came to me because I was thinking about authors who have impacted my own writing, even if I don't read them anymore. You know, I read, like, the Animorphs series very much into that. I realized I'd forgotten that I actually used to read Lurlene McDaniel books. And she actually, I believe several of her books have to do, they were a young adult series have to do with chronic illness. And I had, like, forgotten. It was like a flash of a memory of a scene from her book. And I said, oh, gosh. And it was like, about cystic fibrosis and, you know, very, very different. But I was thinking, I want to tell a story about a young girl who gets this diagnosis who then feels kind of othered. What does her life look like? Who does she connect with? And what if, in fact, instead of a chronic illness being perceived as, like, some sort of weakness, but it's actually your superpower?

Rachel: 

I love it.

Erica: 

What if it actually is a way to see the world in a way that no one else will understand except for the people with something like that? And I just was like, I have just been so invigorated and energized with this idea. So I've just kind of taken off running with it. I love that idea.

Rachel: 

I'm very excited to see where that goes. I mean, yeah, I think that's, it's a challenge, for sure, to write that. I mean, that is challenging. It's not easy, you know, it's not obvious how that becomes captivating.

Erica: 

Yeah. Also, Rachel, I haven't been a teenager for a while, so this is gonna be, I.

Rachel: 

Think, look, I'm actually someone who really loves coming of age stories, like tv shows, books, you know, like kind of teen stuff. I just have always loved those stories, and I think that putting this theme in there. So, anyway, I'm very excited to see where that goes. Yeah, you've got a lot on your plate. Despite having it be, like, a feeling of honing and cutting, it also feels very rich and, you know, varied to an outsider hearing about it.

Erica: 

Yeah.

Rachel: 

On that topic, you know, to kind of wrap up here, I'm curious, you know, given that your condition has brought these limitations and uncertainties, but also, at the same time, this kind of focus and clarity. I'm curious how you think about the future.

Erica: 

How I think about the future. I think I have to look at the future in a very different way than I have been experiencing in the past. Quality of life is so important to me now. I think it's very important to a lot of people. But in my particular experience of how I want to focus on the future and what that might look like, I want to be able to write my books. I. You know, I will definitely not. I will probably always have a day job, and I think that's good for insurance purposes, for just sake of having something consistent and not relying on my books to be, like, my full time income with, like, talking about stress. Right. Like, really removing that component. I think my. My future is really going to be like self care, which to me, looks like. What are the things I enjoy? Can I follow the path of my curiosities? I really want to practice piano more. I really want to start, I don't know, horseback riding. Like, I. There are these interests, and I want the space, I want the breathing room to be able to do that. So the future to me is not one specific thing, not one specific place, but really this, like, mindset. And geographically, where can I sort of have a life where quality of life is something I can really prioritize for myself?

Rachel: 

I loved Erica's reflections on her relationships, and particularly how her friends asked about her spoons. I think that's a tip that I can take when I'm supporting other people, too. And I also really, really appreciated her basic acknowledgement that it's really messy. That's just so important, because when it's messy for me, then I can remind myself that it's messy for everyone, and I'm not doing it wrong.