Episode #109: The Power of Processing Through Writing
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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Before I could learn how to live with my invisible illness, I needed a way to process what I was going through. In 2015, I attended my first writing class and it changed my life forever. This was the first time I felt like I could truly begin to piece together the puzzle of my diagnosis.
Writing gave me a sense of freedom, and I wanted everyone who was living with an invisible illness to experience this release.
But I still longed for community and an opportunity to connect with others who were going through something similar, even if it wasn’t exactly the same. So I created what I wished had existed for me, the Made Visible Writing Class. A safe place where people living with invisible illnesses could write, share, and connect with one another while confronting life’s challenges through writing.
In this episode, four of my students from the Made Visible Writing Class, share their experiences and their reflections on how writing has impacted their lives. Whether grappling with chronic pain or navigating through mental health challenges, each student shares how writing has given them a voice and a community in the midst of their struggles.
“To be in a group where no one is questioning how bad your situation is or trying to invalidate what you’re experiencing in your own body is so refreshing.”
Reasons to Listen:
Understand how empowering putting pen to paper can be
Discover how writing allows you to learn more about yourself
Learn how writing can impact more than you may realize
Learn how it can be safe to be vulnerable in a supportive environment
Experience how you can connect and resonate with others, even if your circumstances aren’t exactly the same
“I’ve realized that writing just makes me feel so much better in general, whether I decide to publicly share it or not.”
“The overarching memory for me is how I was so in awe of everyone. Getting to know people through their stories was amazing and it allowed us to really get to know each other.”
About Our Guests:
Lindsay Ellis
Lindsay Ellis is a published humor writer and satirist. Her articles were published online in publications, such as McSweeney's, Robot Butt, and Belladonna. She was a writer with the online sketch group ‘Cackle Comedy’ and had her sketches accepted to short film and sketch festivals. She is currently a freelance contributor at The Beaverton, Canada’s online news satire site.
Lindsay’s first web series Clambake was released on YouTube in 2017. She co-wrote, produced, and starred in the series. She has acted in numerous shorts. In 2018, she was nominated for Best Comedic Actress at the Austin Short Comedy Film Festival. Lindsay performs stand-up at clubs and online venues. She was the runner-up at the Erma’s Got Talent - the Erma Bombeck Festival Stand-Up competition in 2020.
Lindsay has an MSc, MBA, and Mrs. because she likes to collect letters around her name to let other people know how smart and lovable she is.
Website lindsayellis.com
Connect on Instagram @mslindseyellis
Laura Frégeau
Laura Frégeau is an Occupational Therapist and grad student living in Montreal, Canada with her partner and two children. After a fourteen-year fight for diagnosis and treatment, Laura manages several chronic conditions including Common Variable Immune Deficiency, Paroxysmal Dystonia, and Hypermobility Spectrum Disorder. When her symptoms became disabling in 2019 and the health care system offered no answers, Laura relied on the stories shared by others with chronic illness to learn how to create a satisfying life with her limitations. These stories inspired Laura to write personal essays, which continue to help her to process and communicate her experiences during her long diagnostic delay. The importance of sharing stories is the basis of Laura’s clinical practice and research in rehabilitation science.
Connect on Instagram @ergofregeau
Ali Leipzig
Ali is the CEO + founder of Soul Camp Creative, a branding, web design and retreat agency working with companies who have ideas that will change the world. After graduating with a Communication Designs degree from WashU in St. Louis, she followed her passion for wellbeing practices and has been designing brands ever since. She is a certified reiki master, holistic health practitioner, sound + vibrational healing practitioner.
Website soulcampcreative.com
Connect on Instagram @alisonleipzig
Grace Anderson
Grace Anderson is a 22-year-old college student from the coast of Maine. When Grace was 12, she began experiencing periodic episodes of illness, consisting of extreme vertigo, nausea, and sweating. Within a few months, she started having daily flu-like symptoms. Over the past nine years, as symptoms got worse, she was diagnosed with Lyme disease, Postural Orthostatic Tachycardia Syndrome, Hashimoto’s thyroiditis, and migraines. She spends her free time reading, listening to music, and writing about her experience being chronically ill.
Connect on Instagram @heyitsgrace13
“I was processing the chaos of not understanding what was going on with my body and not understanding why it was happening to me. And writing gave me a tool to slowly and safely explore one little theme at a time.”
Join the next Made Visible Writing Class!
An 8-week writing class for people living with or affected by invisible illness. Write, share and connect with others in a safe and supportive space. This class will also include guest teachers who will share their experience with writing, sharing and publishing their invisible illness stories. Class begins March 29th! Click here to learn more!
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[00:00:00] Harper: Please note this podcast is intended to provide information and education and is not intended as medical, psychological, or psychiatric advice and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a license or registered healthcare professional about your individual condition and circum.
[00:00:25] Made visible, helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
[00:00:47] Hey guys. Welcome to another episode of Made Visible. I'm your host, Harper Spiro, and I'm so glad you tuned in. I am so thrilled to be back with all new episodes of Made Visible. I have missed you all so much, and I hope you're equally as excited about this show being back as I am. We're in such different places in our lives since I launched new episodes back in 2020.
[00:01:12] It truly feels like a lifetime ago. We have recorded some truly incredible episodes over the last few months with some really, really special guests that we hope you love as much as I have. Today's episode is extra special to me because I had a conversation with four of my writing class students, Laura Frak.
[00:01:32] Allie Leig, Grace Anderson and Lindsay Ellis, they were all part of my Winter 2021 class, and some of them are regulars in my monthly made visible writing session where you can drop in for 90 minutes once a month to write, share, and connect with others in the invisible illness space. You can learn more about the drop in class at made visible stories dot.
[00:01:56] So much of my own processing of my own invisible illness has been through writing. I've been in personal essay writing classes since 2015, and honestly, I couldn't imagine my life without them. I started the made visible writing class because I wanted people living with invisible illnesses to have an outlet to write, share, and connect with others living with invisible illnesses, and ultimately, it's what I wish existed for me.
[00:02:23] I am so thrilled to share this conversation with you from four of my students, and I really hope you enjoy it. Be sure to listen until the end to hear updates about the made visible writing class that may be of interest to you. And also tune in this Thursday for a bonus episode as we'll be sharing two essays on the show.
[00:02:44] Read by Lindsay and Laura. Now welcome Laura, Allie, grace, and Lindsay. I am so excited to see your four faces and hear your voices and have this conversation around writing and invisible illness. So let's start off. Let's have you each introduce yourselves, your name, your location, and your connection to invisible illness as brief as you can possibly go.
[00:03:12] Laura, you wanna start? So my name is Laura Hijo. I'm in
[00:03:15] Laura: Montreal, Canada. And, uh, my connection to invisible illness is that I had
[00:03:21] a 14 year
[00:03:24] journey to get proper diagnosis and treatment of
[00:03:28] multiple chronic conditions that I'm living with.
[00:03:30] Um, the most important of which I think being hypermobility spectrum disorder and common variable immune de.
[00:03:38] Another connection that I have is I'm an occupational therapist who I'm now going to be working with adults with chronic conditions, and I'm also a researcher in rehab science, working to bring
[00:03:49] Harper: patient stories into academic discourse. Allie,
[00:03:54] Alison: I'm Allison Lipsig. Uh, Allie as Harper just said, um, I'm in the Hudson Valley in New York and my connection to invisible illness is, uh, when I was a teenager, really trying to figure out some things that were going on with my body.
[00:04:09] uh, found out I have P C O S kind of before the mainstream that really went more mainstream and more doctors were knowing about it. And then in my adult years, uh, was diagnosed with Type one diabetes. So I
[00:04:20] Grace: live with that every day. Grace. Hi, I'm Grace Anderson. Um, I'm from the Costa Maine. Uh, my connection to invisible illness is when I was 12, I collapsed at a Taylor Swift concert and it just seemed to get worse and.
[00:04:37] From there, and over the past 10 years, I have been diagnosed with Lyme disease, postural orthostatic tachycardia syndrome, migraines, and Hashimoto's thyroiditis.
[00:04:47] Harper: Lindsay.
[00:04:50] Lindsay: Hi, I'm Lindsay Ellis. I am in Toronto, Ontario, Canada. And my connection to invisible chronic illness is when I was 20, the first job I ever had.
[00:05:04] I only had it for about two weeks that my back completely seized and I was in bed and I couldn't move. And ever since then I've been trying to figure out why that happened and. The medical community has informed me that if I really wanna know why, that I should let go of that dream. And so I have no real diagnosis other than I, it is some sort of autoimmune condition.
[00:05:31] And then I have a few other like physiological things in my body where they don't work. Perfect. So that's, that's.
[00:05:40] Harper: Thank you so much ladies, so excited for this conversation. I know it's been a while since we were all together, uh, in a class, but do you remember what it was that intrigued you to sign up for the made visible writing class?
[00:05:53] Laura, do you wanna start? I wanted to meet Sarah Ramey.
[00:05:58] Laura: I had started. Learning about chronic illness and living with chronic illness through podcasts like this one. Um, and I heard Sarah Rainey's episode and just hearing the term wonky woman with mysterious illness
[00:06:12] Harper: was really a game changer
[00:06:14] Laura: for me. And at the end of that podcast, I think you had.
[00:06:18] Advertised the class that I was a part of, and then through following you and following Sarah Ramey on Instagram, I found out that Sarah Ramey was gonna be one of the guest presenters in the class. And immediately was like, no, I have to be in the same virtual room as that woman. And that was what really got me to fill out the form and, and, and
[00:06:42] Harper: apply for the.
[00:06:44] Amazing.
[00:06:45] Grace: So for me, um, my mom was a ma visible fan and she sent me the advertisement for it. And I was a little hesitant cuz I didn't really do many online classes or anything. Um, and I had never written in an environment like that. Um, but I don't know, something about it just, I kept thinking about it and I thought like this would be a good opportunity.
[00:07:13] not only for me to grow as a writer, but to write about something that I hadn't really written about too much. So I took a leap of faith and decided to do it. And also . I wanted to meet Allie Hilfiger .
[00:07:30] Harper: There's a lot of fangirling happening here, huh? I
[00:07:34] Grace: knew when I saw that she was gonna be a part of it that I, I just really wanted, Meet her and talk to her, which I got to.
[00:07:40] So that was cool.
[00:07:42] Alison: I love it. I, um, for me, I mean, I wanna just echo cuz you have great guest Harper. Um, so seeing the lineup of when I signed up I was like, Ooh, I wanna learn from these people. Um, but I've known and been friends with Harper for years and have seen this work that she's doing. And you knew about the podcast, probably listened to a few of them, in all honesty, but not a regular listener.
[00:08:02] And I saw her post about the group and it was peak covid. and I was in a moment where I was like, I could use a place for creative expression. I could use a place to connect with people that know my experience in the world in some sort of way. And I was like, let's try this thing. I'm really glad I did, which we'll get into more, but that was really the entryway for me.
[00:08:25] I think
[00:08:26] Lindsay: I am the unique one because I had no idea who Harper was and I'd never listened to her podcast or seen anything. But I am on Facebook cuz I'm old and she posted in a group that I was in about her writing class coming up and. Again, it was like a year into the pandemic. I wasn't working. I had some other writing, but I'd never done any sort of personal essay, kind of style writing, and I'd also never been in a group that.
[00:08:59] Really would understand what it's like having a chronic illness. And so those ideas really brought me in because they were, it was a creative outlet I hadn't experienced with a group of people I was interested in getting to
[00:09:13] Harper: know. I love it. I love all these answers so much, and I love how you all got to me and into the.
[00:09:20] So it can be super vulnerable to join a group virtually during the pandemic when you're super isolated and alone, and be amongst these people that you've never met before. And talking about your health and putting pen to paper, what memories do each of you have from those early days of those classes where you came together with these new people, you put pen to paper and you shared with each other.
[00:09:47] What do you remember about that experience?
[00:09:50] Alison: I remember, um, feeling like really well, first off, so always so scared to share. Like I feel like Harper had to like be like Allie share. Um, but I remember , the overarching re memory for me was like just re remembering how in awe I was of everyone. Like, just like getting to know people through the stories that they were writing.
[00:10:12] I. Whoa, women are so amazing. And we really got to know each other because we were editing each other's, we had different groups and we were editing each other's papers like during the week. And then, you know, the other group, like when they got to hear them share during the class, it was like, oh my God, I wanna get to know that about that person.
[00:10:32] So for me it was like, so. Wow, that was like a big, a big memory of mine. Um, being in awe of the women in the class. I remember
[00:10:42] Lindsay: it was a bit scary being vulnerable at first, but everybody was so supportive. It was amazing. And then Harper, you were really good facilitator and that you made sure that nobody was ever going to.
[00:10:59] Critique or question what the experience was. All of the critique was how is the writing not anything about the topic. And then also to be in a group where no one is like, are you sure it's that bad? Or have you tried coconut oil or just doing something that invalidates the experience that you're having as somebody in your own body that no one else can necessarily understand?
[00:11:29] And then, Because we're women and we're not often believed going into the medical community and always having to prove that what you're saying is happening is actually happening. It was so refreshing to be in such a supportive environment, especially when you're also trying to find your creative voice.
[00:11:48] Laura: I was very intimidated. My first writing class. I had never
[00:11:52] Harper: written anything.
[00:11:55] Laura: Except for like little short stories for fun. I'd never written anything about my personal experience and there were some people who were coming in who were more established writers, who had publications who that were going to be coming out soon or seemed to have more established careers, and I was very intimidated.
[00:12:12] But the thing that made me feel very comfortable was that you gave us all sort of
[00:12:19] Alison: equal power
[00:12:21] Laura: when it came to. The editing that we did for each other and the feedback that we gave each other. So I though I felt in our first meeting that, oh, there's gonna be a hierarchy here. When I read the My Group's essays for the first time, and when I read my feedback for the first time, that really disappeared.
[00:12:40] So the feedback aspect of it, Sort of made it really clear that we were all on on the same playing field here together, and we're all learning from each
[00:12:49] Alison: other. I just wanna add on to that, what Laura just said around the feedback, because when I heard we were gonna be giving each other feedback, I was like, like it just felt like school again.
[00:12:59] And I was just like, oh, no. , wrong decision, Allie. Like, what? Why would you do this? Like this is a, and then being able to get that feedback and see like, oh wait, feedback can also be positive. Like, I was like, oh, there's like good things about my writing. And then of course constructive feedback around like, oh, this is Al you're really good at bringing nostalgia into your writing.
[00:13:21] Or you're really good at this. Like, move in here or like, uh, like stop trying to wrap this up in a nice bow, like I remember. Things that I heard that were really supportive and helpful, and I wanted to add that to what Laura said. Cuz like for me it was like so terrifying to think that people were gonna be seeing my writing and critiquing it.
[00:13:40] Um, but it
[00:13:41] Harper: was really helpful. I'm so glad you included that and you are the queen of nostalgia, so I'm glad you brought that up. Um, but really I think that's a really interesting point because it can feel really daunting when you have an addict had experience with that or recently, especially as an adult, and then to go into it and go, wow, there can be benefits of this.
[00:14:03] I can learn and grow and I'm open to receiving that. And Lindsay, you brought up a point that I wanted to touch upon further. Which is this concept of being amongst people who get it, being amongst people that while you may not have the same conditions, and as our listeners can hear, hear today, none of you have the same conditions, but you have similar experiences medically with family work relations, uh, relationships, et cetera, that you can connect on.
[00:14:35] So I'm curious, and grace, I'd love for you to start to speak to your experience about. In being in a room with other people who just get it?
[00:14:44] Grace: Well, one of the reasons I was actually hesitant about joining the class at first was my first thought with pretty much anything is what's gonna happen if I don't feel well?
[00:14:55] Like, cuz it seems like it's always made into a big deal and I feel bad even though I can't control it. But I quickly realized, I don't need to worry about that in this group of people. Like everyone gets it. There's no pressure. I didn't have to worry about something I can't control. And it was really nice to read everybody's work and be able to say like, oh my God, I know what that's like.
[00:15:23] And even though it's not the same condition, like chronic illness, invisible illness tend to. Affect people in similar ways, even with different symptoms, even with different diagnosises, like, and that was just really nice to find a group of people who understood, even though it wasn't like an exact replica of my situation, it just, it felt nice for
[00:15:49] Laura: me.
[00:15:50] There's two moments that really stick out. One was I also have orthostatic intolerance, and so I was in a breakout room with three other. Participants in the class and we all had orthostatic intolerance and we all pulled up these like huge two liter water balls,
[00:16:08] Alison: next to us .
[00:16:10] Laura: And it was just like this nice bonding moment between us.
[00:16:13] And the other moment that pops up is that when I am in a flare, I have a lot of trouble speaking and I've never attended a class or been on camera before when I've been in a flare. I've always kind of hid away. But knowing that I could come on camera, I could be lying down, and if I had something to say, I could write it in the chat and it would be read out to me.
[00:16:38] That was the first time I felt safe. Being able to do that in a group context, and I've actually been able to bring that forward with me in work meetings and things where sometimes I will be off camera if I'm lying down, but more confidence to write things in the chat when I can express it.
[00:16:55] Alison: I think, uh, being in a room of people who get it, uh, made me a more brave and courageous writer because there are things that maybe honestly, inspiration from everyone else, um, was really helpful to like see how willing people were to just describe their.
[00:17:15] Experience in things that maybe for me, I had kind of been like, that's for me and me only. Like I don't need to get that in into that much detail. Um, so I think it really helped my writing personally and then, Yeah, there's just like a, there's just a bond that you're just like, we get it. And there's an instant comfort that I experienced because of that.
[00:17:38] And we could laugh about things that like other people might not laugh about. Lindsay made us laugh a lot and like just, Even details in my writing that, you know, I would be like, Ooh, that's too much. And people would be like, share more about this. We wanna hear the description. And um, it was really freeing in that way personally to like, honestly release probably some shame around that experience because it's like, it just is.
[00:18:05] And like everyone in the room got that. Um, so yeah, that's for me. , I would
[00:18:11] Lindsay: say it was unique for me in that the bonus of invisible illness is you can not look sick, so you can pretend a lot everywhere you are. And so for me it was really the experience of not having to pretend. and being able to show up authentically.
[00:18:36] And as Laura mentioned and Grace, like I'm pretty sure I did half of them on my couch because I can't sit in the chair for three hours, like my body just like revolts. And so being able to say, Hey, I'm on the couch today, and nobody judges, everyone's all. , I don't care where where you are, you're here. And that's the important part is that we get to hear your input and hear your feedback and hear your writing.
[00:19:09] And so that, that was so refreshing and I think that it introduced me to not pretending as much in my real life either, which can make you a little more vulnerable, but really also, Is so much. It's so freeing. .
[00:19:28] Harper: I love that you, several of you brought up that concept because I think you know, the confirmation here is that you showed up as yourselves.
[00:19:36] There was no putting on a show, there was no production, there was no hiding. You were totally being your authentic self and for you to say how much excuse. How much you felt like yourself, being yourself in this moment was so powerful and freeing says so much to, why can't we have more of this in the workplace and in life in general?
[00:20:00] Of the number of emails that I would receive from students saying, Hey, I'm gonna be off camera today. I'm feeling this way, or heads up, I'm gonna be laying down. But I'm here, I'm present. And I would always respond saying, okay, whatever you need to do, I'm here to accommodate you. If you're gonna show up and you're gonna be with us, great.
[00:20:20] Like, that's all that matters. However you are in that moment, on that given day, like so be it. That's what you can give and that's what you can receive. So I'm really glad that you brought that up. So let's pivot a little bit. What have you learned about yourself through.
[00:20:38] Lindsay: I think, um, one of the things I learned about myself is cuz having invisible illness can be very isolating.
[00:20:46] And even though maybe no one else has my exact, exact, exact experience, my experience isn't unique. And I'm not the only one who is feeling these feelings, and I am not the only one who has these same frustrations and challenges for acceptance and to find their place in the world or to have people just accept them for who they are.
[00:21:14] And I think I learned that when I talk about my unique experience, it becomes also a more universal experience. And then, I didn't learn this cuz I already knew it, but I'm also hilarious.
[00:21:34] Harper: I just realized I was on mute and I needed to make sure that I got my laughter out. Oh my God, I love you so much, .
[00:21:42] Lindsay: But then it's also the fact that I'm able to find ways to bring humor and Lev levity into these more serious topics because, Like everybody who has a chronic or invisible illness isn't sitting around crying all day.
[00:21:59] Right? Like that's an impossible life experience. Like we have other emotions like joy and laughter, and we wanna be able to make fun of ourselves and see the humor in everyday life. Like that's not, that's not something we don't want to have because we're in pain or we can't participate as we want to.
[00:22:18] Grace: First of all, I completely agree with everything Lindsay just said, , and like that's something really important to me is humor. And I really found that in this class. So something else I learned, I think was that, um, writing was easier for me than speaking. Like I was able to write about things I had never really talked about and.
[00:22:43] At the beginning of the class, I was very shy, very reserved, and that's kind of how I am in general, but it felt like even more so with a group of people who I had never met. But yeah, I feel, I feel like over time I was able to really open up, not just in the class with people, talking to people, but in my writing and, and write about things that I had never written about, never really talked about, and it was.
[00:23:13] easier to get it out on paper and um, getting feedback on it was a little nerve-wracking, but also felt so relieving and it felt so great to be able to get all these stories out and have somebody listen to them, even if it wasn't through talking.
[00:23:31] Alison: I think what I will share and say is that I learned that I love to write.
[00:23:39] I consider myself, I'm more of a visual artist. Um, went to art school, like I am a paint. I like to paint, draw. I've always liked to write, but again, really only in like a school setting or my journal not in this sort of way. Um, So I learned, I like it, like I really like it. It's cathartic for me. I've always kind of had this like dream to write a book.
[00:24:03] Honestly, the dream has gone away after this class, not because of , not because it made me not want to write, but I mean, my work, I work with authors. I just see the process. I have less of an attachment to it and more of like, if there's a book that needs to pour out of me, great. If not, this is a. of expression that I can do for myself and also share with people in my world whenever I feel like it, there's like a little more freedom around that, which feels cool.
[00:24:31] Um, it gave me confidence, I guess as I'm talking about that. It gave me confidence as a writer because I do write for my job and I like to share online a little bit about some things going on. So that's cool. Um, and then as personally as a writer, I think I learned. Um, and I knew this about myself in general, so it's like it's, it's both and, but I learned that I'm able to access depth of emotion, of an experience, but also make it palatable in a certain way through different techniques that, again, the class really helped me see what those were and it, it really doesn't matter how I navigate life And yeah, it's a cool awareness to have.
[00:25:13] I'm really
[00:25:13] Laura: happy that Allie mentioned how much she cares for her. That's something that I found like throughout reading her essays as well, what I learned about myself through this process was that a lot of my writing didn't have an emotional depth to it. It was still a lot of description, and it really pointed out to me that that was the phase I was at in terms of processing.
[00:25:37] The chaos of not understanding what was going on with my body and not understanding why it was happening to me, and it also provided me a tool to sort of slowly and safely explore one little theme at a time, at a greater emotional level. So that everything didn't necessarily have to come flooding in during the class.
[00:26:00] I think in our fifth week, I actually had to choose a different topic that wasn't about my chronic illness because it was too, I felt like I was too raw, too emotional, and it was bringing me back into the chaos, and it was still a safe place for me to learn what those boundaries were and what work I needed to do to continue processing what I had been.
[00:26:23] Harper: I'm so glad you bring that up. It's a conversation that I feel like Grace and I have had so many times of, at what point do you need distance from your writing and from the experience? If you write about something that just happened, are you able to have any sort of reflection and look at it from a different perspective?
[00:26:41] It's unlikely. And how there's of oftentimes where you need space from the writing. In order to process and you need space from the experience that you went through that may be able to help you have a different perspective at a later date. Um, and I think the concept of being re-triggered or having certain level of emotions that you dig back into that you haven't felt in a while about an experience can be really challeng.
[00:27:09] And at the same time could probably be very cathartic and helpful to get it out of your body and release it to a certain extent. So I'm really glad you brought up that topic. I'm really curious, cuz I don't know all the answers for each of you on this, is what role writing has played in your life around invisible illness since class?
[00:27:30] You know, several of you show up to the monthly writing sessions that we facilitate here, but are you writing behind the scenes? Are you looking to get things published? What role does writing play these days? .
[00:27:44] Alison: Well, I joined those monthly writing classes because the having a sit down time to focus on this is really helpful for me.
[00:27:51] Like I. Don't write in the same way when I'm outside of class, like I, I do writing in my journal and if I need to write about what's going on with my body or my illness, like I will do that. But it's not in a, in a like structured way. I'm gonna write here about this specific thing. I will say I think it's bled into because the shame, as I mentioned before, has released a little bit like I, my experience as someone living with an invisible.
[00:28:18] Infiltrates other writing that I do in this kind of like a seamless way for my work. Um, but it's, I really like having the class cuz for me it's like a sit down time, um, to do it. I have seven
[00:28:33] Laura: essays that have been submitted to the publishing world and still waiting for some feedback. I haven't been published.
[00:28:41] but I'm hoping that 2023 is the year I get to, I get to show off one of my essays that's been, and, and widely share it. And what the classes brings me is it's a way that I can come up with new topics and ideas based on what. The others are sharing from their writing and directions that they're taking,
[00:29:03] Harper: as well as the
[00:29:04] Laura: prompts that kind of open me up to considering things from a different perspective or a new, um, a new angle.
[00:29:11] So I'd like the classes for triggering new ideas and in between I'm really working on the editing process for a few of the longer pieces
[00:29:22] Alison: I've put together. Still trying to refine and,
[00:29:25] Harper: and get them. Can't wait to see those out in the world, you better share them with us. So I write a lot .
[00:29:33] Grace: I've realized that writing just makes me feel so much better in general, and there are times when I have to like step back from something.
[00:29:43] Um, and there are some things that I'll probably never share. Um, or I might write now and share in like a year or two. Um, There are also things that I've written for the purpose of being shared, even if not to be published. Like I wrote something recently that I shared with my parents, my brother, my aunt.
[00:30:04] Just hoping that this would give them kind of a glimpse into my world and what it's like for me. So, yeah, uh, the prompts in class help a. , but even out of class, I write a lot. I, uh, get randomly inspired or I randomly think of a memory and, um, sometimes I'll just like take notes on it and then write it in like a few months.
[00:30:29] Um, if I don't feel like I can write it at the time for whatever reason, or sometimes I'll sit down and write like an entire essay or almost an entire essay. And yeah, sometimes I'll start something and then just have to return to it in a little while. But yeah, I write constantly all
[00:30:49] Lindsay: of my projects, um, since the class are really, cuz I do mostly screenwriting, so like pilots and features.
[00:30:57] So really, My writing has gone to that focus, and so currently invisible illness is not in any of those, but there was one essay that I wrote in the class that I think I could somehow take that experience from the essay and turn it into like a movie. I haven't done it yet, but it is on my project Ideas.
[00:31:25] Harper: I love this. We need to discuss this further. Um, so Laura, you mentioned Sarah Ramey and Grace mentioned Allie Hilfiger, uh, as guests on the podcast as well as teachers in the mid visible writing class. When you guys think about writing an invisible illness, are there any books or authors other than those two that come to mind as you read this essay or you read this book and immediately you felt seen and represented and it made you wanna read it over and over again or give it to everyone and say, this is like my experience, they get it.
[00:32:04] Grace: One for me, who was actually also a guest speaker, um, Susanna Haen. who wrote Brain On Fire. Um, I saw the movie first, and actually that was something else my, my mom recommended to me and is like, this seems like you, and of course I didn't have, or I don't have the same thing that she did. But watching that and relating to it was great.
[00:32:27] And then reading the book after. , and of course Allie Hilfiger her
[00:32:32] Harper: book too. Laura, you were raising your hand. Yeah, right
[00:32:36] Laura: now I'm in the middle of Invisible Kingdom by Megan O'Rourke. I'm incredibly, we, we have some of the same diagnoses, but I'm, I'm relating to it incredibly hard in terms of just the amount of effort we put into maintaining our bodies during.
[00:32:58] The long diagnostic delay where we just had no answers and no one seemed to see the amount of effort we were putting into appearing well. So getting those comments like, oh, but you're a healthy young woman in a doctor's appointment where it's like, no, no, no, no, no. Just because I was able to wash my hair today doesn't mean I'm a healthy young woman.
[00:33:20] And so she's been able to articulate, In a way that really speaks to me because she's combining the personal experience with a lot of the scientific and research based and history of how did this happen? How did we get here? And so I've been really appreciating, um, invisible Kingdom by,
[00:33:41] Lindsay: I'm gonna echo the Sarah Ramey book because I read that and then I think I recommended it.
[00:33:49] like almost everyone I know, especially anyone who, like, I have some friends who are in like the d e I space and other people who I know who have chronic illness. And then also, um, Jen Passov, I think that's how you say her last name. Her aunt being human, cuz she also has like, , she injects a lot of humor into her book.
[00:34:13] Actually. Both of them have a lot of humor in in their books, so I really appreciate people who are able to bring that in while also like being very clear about sometimes how hard it is.
[00:34:28] Harper: So I'm interested in hearing what is your favorite part of the writing process and your least favorite part of the writing.
[00:34:38] I am
[00:34:40] Laura: like, uh, Kurt Bon's, one of my favorite authors, and he describes two types of writers. The person who can just sit
[00:34:47] Alison: and slam
[00:34:48] Laura: out thousands of words and then has to come back and really chop it up. And he describes the person who can put out one word at a time. But then by the time the sentence is finished, it's perfect.
[00:35:01] And I'm definitely the type of person where I'll get into a flow state, I'll get hyper-focused, and all of a sudden I'm staring at five pages and then I have to go back and turn that five pages into coherent, readable piece. And so that's something. Getting into that flow state is easy for me. That's what I really enjoy.
[00:35:22] Sometimes the most beautiful sentences that I've, and ideas and themes I've explored have been from, uh, have been surprising even to myself. And then I have to go back and shape the story around those beautiful sentences and themes that have come out. And that's the part that is a bit of the.
[00:35:44] Alison: For me, because it's
[00:35:46] Laura: not reliant on that flow, it takes a little bit more energy for me to go back and turn it into something engaging and very
[00:35:54] Alison: readable.
[00:35:55] My least favorite part is starting. I , like, I, I just, I have an experience a lot of times where I, it might be my perfectionism, whatever. I'm just like, where do I start? How do I get in? This is wrong. I like the voices are just really loud when I begin. , and I love that Laura mentioned flow state because that's the best when you get into that.
[00:36:20] Um, and if I just let myself go, which this class really helped with, um, I can get there. And my favorite part of getting there in that flow state is like kind of seeing the gold that reveals itself in what is there and seeing the shape of the story. Being surprised by it almost, of like, oh, whoa, I didn't realize that's where this was gonna take me.
[00:36:44] And there's something really workable here. Um, and that's really fun to experience.
[00:36:49] Grace: The hardest part for me is getting started. I have the hardest time with like the first line or two, but when I get going and when it starts to flow, and it's just like I'm pouring my heart out and getting this story out of me.
[00:37:05] That's my favorite part. Um, and I, I love being surprised also. Like I start writing a story and it's about one thing, and then it turns out to be about something completely different. And coming to that realization is really cool. But also, um, I realized in this class, I always thought that I hated editing for some reason.
[00:37:27] Um, like going through people's feedback and like making changes like. In my mind it was like, that's so boring. But I realized that not only do I enjoy it and making the piece better by taking some feedback from others, um, but I'm also really good at it, . Um, and it sometimes it takes a few drafts to get a piece to a good place, but I feel.
[00:37:55] not every time, but a lot of the time, um, it gets better each draft, and I really enjoy watching that happen.
[00:38:03] Lindsay: I'm gonna be an echo. Getting started is definitely super hard because you're get overwhelmed. So that's where like having the writing prompts and being guided and facilitated into the starting.
[00:38:18] Cuz I think a lot of people like have those voice like, uh, this isn't, this isn't a good spot to start or, Uh, I don't know how you'd begin this story, so whatever. I'm not even gonna write it. And then also, um, I find that. When I write, sometimes I write the way I talk, and then, but if you read it, it doesn't make any sense because you don't have the inflection of my voice.
[00:38:44] And so then the hard part was trying to figure out, okay, if I can't say this, like this, what's another way? That I could say it so that, because everybody sort of said, I don't understand what you're talking about here. This doesn't really make sense. So going back and editing and trying to figure out how to make a thought that you had while you were just like furiously writing and actually turning into something that your reader is going to understand, that can also be like a bit of a process.
[00:39:14] But really getting started is the super hard part.
[00:39:18] Harper: I love it. So many good tips there. So last question for you ladies. What advice do you have for someone with an invisible illness who has never written before, but has an interest in starting?
[00:39:33] Alison: I mean, my first initial, uh, thing I wanna say is just if you have an interest.
[00:39:40] Trust yourself, follow it. Um, you don't know where it's gonna lead you. Just be curious about that interest. Um, and there's no pressure. Like if you join a class with Harper or just do it on your own, like whatever that is. Like there's, you don't have to be a published author the next day. Like, this is just for you to be curious about your own internal desire to go, oh wait, I kind of wanna write.
[00:40:04] And a lot can be revealed. Not mu you just don't know what's gonna happen. Um, so I just say trust yourself for me. It was such a great, I'm so glad I followed that little inkling when I saw Harper's Post, and it's brought me on a journey and I consider myself a writer now, and I'm really glad I did it. So let that be inspiration.
[00:40:25] Lindsay: My advice would be to feel the fear, but do it anyway. And even if you think you're gonna be crap and no one's gonna like what you write, try it. Because especially in an environment like the one that Harper creates in her class, the stakes could not be. , right? You have no risk. No one's gonna say, you're terrible.
[00:40:51] You should give up. Why did you ever even think you could show your face here? Or whatever that nasty voice in your head is telling you, no one will say that to you because if they did, they'd be a jerk and you might actually discover you have a talent that you didn't even know that you. and it'll be like a nice blossoming of this side of yourself that you didn't even know existed.
[00:41:17] Laura: For our writing class, I don't know if it was just beautiful scheduling or done on purpose, but starting with Jen pastel off as the first guest who is an author who is. So open and willing to
[00:41:32] Harper: share, like willing
[00:41:34] Laura: to share everything that, for me, having read her book, coming into that first class really inspired me just to go as vulnerable as possible, just rip off the bandaid.
[00:41:46] And I wrote an essay about how, what I learned about pain while giving birth to my daughter as someone who had been experiencing pain for years beforehand and just, Really ripping off the bandaid that way and getting as vulnerable as I could be. Made every other subject a little bit easier to touch because I had already talked about the most like vulnerable experience that I had had.
[00:42:13] And so I think for some really diving in there right into the deep end is,
[00:42:18] Grace: is a way to. . Wow. I loved hearing everybody's advice, and mine is similar to Lindsay's and ats, but I guess what I would say is you have to start somewhere. So even if you're hesitant, even if there are things you struggle to touch on, struggle to write about, you're just not ready to, or you don't have much confidence in your abilities, just get started.
[00:42:45] and see where it takes you if you have an interest in it, if that's something you wanna do, definitely do.
[00:42:51] Lindsay: And I just wanna add on to what Grace said, cuz it just like made me think no one's gonna force you to write about something that you are not ready to talk about. So it's not, no one's gonna say, oh, you know what, you didn't, you didn't describe your condition in depth here, or You didn't really tell us about this time that you were ostracized or made to feel less like, you don't have to talk about those experiences.
[00:43:15] and so it becomes a much safer space when you're not being pushed into something that you don't wanna discuss.
[00:43:23] Alison: Totally. I just also wanna add too, like in the class, like I didn't always write about my invis illness and that was a okay, like it was all, all welcome. Um, so it wasn't only because for me it was like, oh, this was too much.
[00:43:35] There were just other things in my life that I was wanting to explore and I was able to do that here. So there's just truly so much freedom in the experience in this class with the. Harper will give a prompt like, if this is not working for you, go. So go in another direction, like there. Even with that, there's freedom to explore what is present for you in the moment.
[00:43:57] I wanted to mention
[00:43:57] Laura: another beautiful moment in our class when you Harper read an essay from one of the participants to us, uh, because she really wanted to share the essay. She really wanted to hear it read, read out loud, but it was such a vulnerable topic that she didn't feel. Comfortable reading it herself.
[00:44:15] So you did create a, you created a beautiful accommodation for her to be able to express it and hear it read in a different way so that even though she couldn't read it on her own, she did feel safe to have you read it to the group. And that, that essay has stuck with me , um, since hearing it. So you create different ways for people to, to share, depending on how, on their comfort.
[00:44:40] Harper: Ladies, I am like blown away. Al, are you gonna say something?
[00:44:44] Alison: Yeah. No, I just, I mean, I just wanted to say about you Harper, cuz uh, to tag onto what Laura said, like, you're just such an incredible facilitator, like, be talking to you all today. I'm like, oh, right. This was amazing and you do such a good job at just making us all feel, well, I felt really, um, special is not the right word, but I felt like you saw my sh my strengths.
[00:45:04] Like, I, I, I felt I did feel special and it wasn't, I think all of us maybe felt that, I don't wanna put my words into, but it's like I felt so. , I felt so great. I would always leave the class feeling like, wow, I have something to give here. And that's like an, an invaluable thing to experience. Like just on top of like, okay, the writing's fantastic, but just the feeling that I was left with, like being a part of and feeling special and great at something, that was something that you were really, you're really good at that
[00:45:37] Harper: har.
[00:45:38] Thank you. I appreciate you saying that. You guys gave such amazing tips on how people can write if they wanna start writing, and I appreciate all that you shared about your own experiences in the class and beyond. I hope that some of these essays do get published or we see them on screen and you continue to put pen to paper.
[00:45:59] Um, so thank you ladies so much for your willingness to show up in class and then show up today. To be on the show and talk about your experience. I adore you, so thank you.
[00:46:15] I really hope you enjoyed my conversation with Laura, Allie, Grayson Lindsay. I think you can tell how much I adore them. So after a year since we released a new made visible Writing class, I am so excited to share that we have a new class starting at the end of this month. It's an eight week writing class for people living with or affected by Invisible.
[00:46:37] Who wanna write and share about your. This class includes guest teachers who will speak about their experience writing, sharing, and publishing their invisible illness stories. This is a great opportunity for you to learn, write, share, give feedback, get feedback, and connect with others who are living with invisible illnesses.
[00:46:58] As you heard from my past students, you don't have to have any experience with writing to join the. And one of the most special aspects of the class is that people are coming from all around the world to virtually attend with a variety of different medical conditions. In all of my years of running a business and running made visible, this class is truly one of my favorite experiences in my life.
[00:47:22] I hope you'll join me starting on March 29th by heading to made visible stories.com to learn more and sign. Keep in mind, we keep the class really small and intimate so everyone gets to know each other really well. Again, that's made visible stories.com to join and sign up. Hope to see you there.
[00:47:47] Thanks for tuning in to Made Visible. We hope you learned about something new today. If you enjoyed this episode, please take a few minutes to subscribe, rate and review the show on Apple Podcasts. Your support means the world to us. Visit made visible stories.com to check out our writing workshops.
[00:48:05] Corporate offerings and more information that can help you in navigating life with an invisible illness. Follow made visible stories on Instagram. See you next week.