The Lady's Illness Library

Sara Tasker on chronic fatigue and invisible disabilities

• Rachel Katz, Sara Tasker • Episode 4

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Ever feel like you're battling some kind of weird, unexplainable health issue that even doctors can't seem to get a grip on? Writer and influencer Sara Tasker gets refreshingly honest about her decades-long journey with chronic fatigue, narcolepsy, dysautonomia, and a whole mess of other “invisible illnesses.” She also opens up about having to completely redefine her idea of success and fulfillment. Despite all the difficulties, Sara shares with us her delightful humor and a new type of hope for the future. 

Sara’s info: 

🔥 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

Rachel

Welcome back to The Ladies Illness Library. This is a collection of stories about unconventional illness journeys, and particularly those that are riddled with mysterious symptoms, difficult to diagnose and strike in the prime of life. These illnesses mostly affect women, and we don't really know why. But even though they're all around us, they still live beneath the surface of our culture. So we're trying to change that here. Our focus in this podcast is not on finding ten tips to get better or, you know, drink this potion or eat this special protein thing. We're not seeking quick fixes. We really just want to hear the stories and have honest conversations with these really insightful women. We are trying to get a view into the shapes of these journeys and the ways that we make sense of them as humans. 

I'm Rachel Katz. I used to be a really ambitious Silicon Valley entrepreneur. I ran my own company and sold it and then became a mom and turned to a different type of life. I personally have grappled with a range of health issues that include an autoimmune disease, anxiety, infertility, fatigue, and a bunch of stomach issues that seem incredibly common among my peers. My substack is called Inner Workings, and this special segment, The Ladies Illness Library, can be found at Raekatz.substack.com. Again, that's Raekatz.substack.com. 

Today, I'm really excited about the interviewee. I am talking with Sara Tasker, who is a writer, photographer, and business coach. She's best known for her Instagram, Me and Orla, which took off in 2013, around the time her daughter Orla was born. Sara built a large following, very large following and a very successful business, and did all of this while she was pushing through severe chronic fatigue, narcolepsy, and a basket of other chronic conditions because she is a successful influencer. To me, Sara is kind of this, like, magical nymph fairy because she's not someone I would ever expect to meet or interact with in real life, given how far I am from being an Instagram influencer. But in talking to her, I found Sara to be just insanely down to earth and thoughtful and also really funny, which is always just awesome when you're talking about, you know, illness. 

Sara's book is called Hashtag Authentic: Finding Creativity and Building a Community on Instagram and Beyond. And she writes the popular substack Entre Nous. You can find her substack at meandorla.substack.com. Let's dive in. 

I want to start actually with something you wrote recently, which just hit me really hard when you. When I read it, It was in your recent newsletter called Ten Things I'm Working on Forgiving Myself For. And you said the number one thing on that list was being sick, which, when I saw that, it was just bam, you know, whew. Gotta take a big, big inhale, because I think a lot of women I talk to would put that as number one on their list of things they want to forgive themselves for, too.

Sara

Yeah.

Rachel

And you wrote, oh, the enduring guilt of living in a broken body. It seeps into everything. In a world that prizes productivity and industriousness as the hallmark of a good human being, it's easy to believe that I must be worthless. Oh, I just got chills again. I'd love to start by just asking you a little more about this sickness guilt. It's so common, but it's also not necessarily obvious why we feel so guilty about it. Can you tell me about that experience of feeling guilty about your sickness?

Sara

Yeah. Why do we feel guilty about it? I think partly because so much of the health messaging we get these days in general is all about, like, self responsibility and accountability. And, like, particularly with these semi mysterious diagnosis, most of the interventions that get recommended to us are things that we have to go away and take full agency and responsibility for.

Rachel

Right.

Sara

It's kind of like, you know, I'll go and do exercise or go and journal or go and do some sort of, like, mindset work or whatever it is. So we're responsible for our own recovery or not as well in that model. But I think it's also something deeper as well that I kind of mentioned with productivity, it's just like, we live in this culture where I think we believe that we're put on earth to work, to do stuff, to help other people like to be industrious. And everything I have ever absorbed in life that tells me whether someone is a good person or a bad person is essentially linked to that. Like, are they contributing or are they lazy? Like, think about the seven deadly sins. Laziness and sloth are in there. And even if you don't ascribe to religion, which I personally don't, it's still. We're still immersed in it. It's still the foundation of a lot of western culture. And we think that laziness is sinful, is morally, like, corrupt. And so how do you then live in a body that basically says, hey, we're just gonna need to rest pretty much all the time, and your contribution is gonna look really different? To everybody else's. And you're gonna need to rely on other people for things. It's tough.

Rachel

I've lived that so hardcore as well. And it's so funny because I feel like I've done so much work to do less and recover from my more acute period of illness and change my life and so on. And still, if I look at my days, I'm still, like, packing them with stuff. I mean, it is a lot less, but it's still kind of like, as much as I can possibly do. It's crazy. And, yeah, I'm still so on that journey and so not kind of at a place where I would just feel at peace with rest, even though I've made a ton of progress from my starting point, you know?

Sara

So true. It's so true. It's like it runs really deep and I don't know if I'll ever be done with the work of it.

Rachel

Yeah.

Sara

And that's why it really gets me incensed when certain doctors will say to certain patients with critique type diagnoses that, you know, it's lack of effort or it's deconditioning and they just need to try harder. Because I think you just. All we are doing is trying and pushing. Like, you can't deprogram yourself from that.

Rachel

I'm not sure if you have this, this as much these days, but when your inner critic about that, you know, that shame and that guilt about the sickness. When she was really strong, what did she sound like? What was she telling you?

Sara

Just that I was worthless. It really was full. Bottom line of just like, there's no point in you existing. Like waste of space, waste of oxygen. And sometimes I would say I'm like a slug. I'm just like a slug. I'm just like a liar in this bed. And I just exist and I'm just grotesque. And that's really how I thought of myself. Yeah, the slugs are actually useful in the garden, right? So, yeah.

Rachel

Tell me, what do slugs do in the garden?

Sara

They help, like, break down dead plant matter and they feed the birds. They're part of the whole ecosystem, right?

Rachel

Yep. Absolutely. Let's go back to the beginning a little bit. When did this health journey start for you and what was going on in your life at the time?

Sara

So there's when it started symptomatically, and there's when it started, as in my brain caught up and finally acknowledged it. I don't know how common that is. Probably not uncommonly common. I think so in hindsight, it absolutely started in my early teens, and it started with dizziness and fatigue. And, I mean, I can remember I would come home from high school, and I would go straight to bed and just sleep. And even then, I was blaming myself for it. Like, started right then. It was my fault I hadn't eaten properly or I'd, you know, walked home from school and I shouldn't have done or whatever reasons I could come up with. And then it just gradually worsened and accumulated additional symptoms as I've kind of gone through life and had my daughter and started work and all of those things. But there's never been a period in my life where it hasn't been, like, I would say, quite a debilitating level of tiredness and fatigue. And I remember there's a few, like, real hallmark moments of. There was a girl in my class at school who got diagnosed with chronic fatigue syndrome.

Rachel

Me, like, when you were in high school.

Sara

So, yeah, I think it was probably unusual to get a diagnosis back then, especially in. Definitely, she was a ballerina and she was doing really well, and then she had to just stop ballet, and she eventually left school, put on the traditional, the full, what they suggest now, I think, which is extreme rest. Oh, my gosh. I remember hearing about her symptoms and seeing her and thinking, that's just how I feel, like she needs to get over herself. And sometimes I think, gosh, what if I had gone? That's how I feel. I should get help, too. Back then, I didn't know where she was. I don't know what her outcomes were, but she did the right thing. And then there were other touch points in my life, again, where, like, I just. I remember struggling to sit upright in a staff meeting when I worked for the health service. Every year, Christmas cards, we'll do a charity collection, and someone suggested chronic fatigue research, and I was like, oh, that's not real. Rolling my eyes. They're struggling with chronic fatigue in the room.

Rachel

Wow. That is incredible. Yeah, an incredible, just perfect moment encapsulating the level of denial that we are able to maintain because of how scary it would be to admit what's going on.

Sara

Yeah. Full on gaslighting myself. And it was easier to believe that it was my fault and I could fix it, or I was just inherently lazy than it was to believe this reality, this one I'm in now, where it's not and it's not going away.

Rachel

Yeah. I mean, easier to believe, but also, I think, maybe less scary, because in that if you can just push through it, then at least it's in your control, you know, versus if it's something that you actually don't have control over, then that's just a big unknown and just very scary.

Sara

Yeah, absolutely. And I have some shame admitting to those beliefs, but I think actually, those beliefs are still really common. And I think the fact that I could be experiencing it really, like, quite similarly in my daily life and still not believe I existed just goes to show how, of course, doctors, some doctors don't believe, because if I can have direct proof of it in my body and still not believe, how on earth do we expect other people to believe in it because of that conditioning, I think, about productivity and moral value. I think it all ties together.

Rachel

I mean, I actually feel like I can believe both at once. Like, I really fully believe that it's not my fault and I shouldn't be ashamed about it and I shouldn't feel guilty and this and that, and I still do blame myself and feel guilty about it at the same time.

Sara

Yeah, yeah, I believe it's completely real and I'm making it up. I just feel like I am unable to move out of my bed and I'm still doing it for retent. Like, what is this for attention or for some sort of ridiculous notion that you're like, well, yeah, have I invented all of these symptoms at this moment?

Rachel

Yeah. The attention thing is, it's bonkers. I mean, for anyone who's not familiar with this, it's. It's not uncommon for medical professionals, especially historically, but even today, to kind of say these symptoms are being made up for attention. There's so many other ways to get attention.

Sara

I had more attention than I've ever had in my life. I had, like, this huge Instagram following, like, when it really took my legs out from under me. Like, the last thing I needed was more attention.

Rachel

I was about to say, especially for you, but you have, like, a massive amount of people paying attention.

Sara

And I will say, actually, for what it's worth, that does help give me credibility, I think, to doctors to be able to say, like, interesting. I think that and success being able to say, look, I have this business. Like, it helped. Once I went to an appointment, I was like, actually, I was just doing an interview for BBC TV this morning. And the difference in the way they speak to you because you already, like, dismissed some of the prejudices, I think. Yeah.

Rachel

Which is super painful to hear because obviously there's so many people who can't go and say that, and so, well.

Sara

Everyone may just lie and say it.

Rachel

Because that's the new solution. Yeah.

Sara

Because that's not. And it should not be. Should not be relevant at all. But it is.

Rachel

Right? Yeah. You've mentioned a number of frustrating things about seeing doctors with this type of illness. So, first of all, I'd love for you to just lay out what your current set of diagnoses are, to the extent you know them, so that everyone can be on the same page about that. Yeah.

Sara

So the collection is. It's always a collection of, like, anagrams and acronyms. So I have a diagnosis of hearts and dysautonomia. They don't really like to use pots in the UK. They prefer just dysautonomia and severe chronic fatigue syndrome. I'm also kind of in the works of a diagnosis of narcolepsy that's evolving, idiopathic hypersomnia or narcolepsy, ADHD, generalized anxiety disorder, which is probably more that I'm not even necessarily remembering, but those are kind of the main ones. My belief on this, in my case at least, is that, do you know that fable where, like, there's all those blindfolded men and they're describing an elephant and one's like, oh, it's big, like a flag, and then they're feeling the ears and one's going, no, it's thin like a rope, and they're feeling the tail and they all describe their bit and they all have a completely different concept of what the elephant is because of their individual piece that they're describing and experiencing. And I think that all of those diagnoses are just different pieces of the elephant. And I'm in the other scene.

Rachel

You have, obviously, this basket of diagnoses and you have a number of names for them, which is, I guess, helpful. And I'm curious, kind of when in your journey, you started actually getting diagnosed for things and started seeing doctors, because you talked about how when you were in school, you were still in denial, and then in your early career, you were also still just pushing through. And so when did you say, okay, I need to go see a doctor? And how did that go?

Sara

Yeah, I mean, I'd presented to my GP quite a few times and mentioned the fatigue and he'd just dismissed me and said various things, giving me antidepressants. So nothing beyond that until my mid, well, early thirties, after I had my daughter, after my business took up. And I really think it was because I started to take myself seriously. I had this huge revelation of self belief and for the first time was able to go, wow, no, actually, I deserve to feel better than this, and this is real, and it's not supposed to be like this. So I pursued a diagnosis of pots. First of all, I'd read about pots and was like, oh, my God, this is me. Took a printout to my GP, and to his credit, he said, never heard of it. Leave it with me. I'm going to research it, and I'll get back to you. And he did. And he referred me to a cardiologist who took my hand. Blessed that man. Took my hand and looked me in the eyes and said, I believe you. And I was like, this is my first appointment of any nature about this. I had no experience of not being believed. I was like, great. Yeah, of course you believe me.

Rachel

So what are we gonna do?

Sara

And then you said, I can't do anything about it. Really? Then my business starts making enough money that I was like, right, I am gonna pursue diagnosis. I'm gonna find an answer. There must be an answer. And started to page to see a private doctor.

Rachel

Yeah. What I find really interesting is that the way you're talking about this is that you decided to pursue a diagnosis. You found a diagnosis, and then you decided to pursue it, which is just so funny. I mean, it's darkly funny, you know, not funny. It's very common, but very much not how most people would interact with the healthcare system or say, okay, I've found this diagnosis, now I'm going to pursue it. And then what you said was, you're like, then I had enough money, so then I really decided to pursue my diagnosis, which is just so messed up and so real and so exactly how it works. Like, you have to have the time and the money, and then you can go to the million specialists and find the one who believes you. And anyway, just a little rant from my end. So then what happened? So you started that process. What happened?

Sara

And I just found that every specialist I saw went, yeah, yeah, you've got this thing that I specialize in. I can't help you. There's no cure, 100%. And then I go, right, I'll try another one. I don't like that answer. I'll find someone else. And it just kept happening. And so I eventually was like, okay, I think I chained tack. And was like, well, where can someone help me? Which diagnosis would be helpful? Because, I don't know. Waste more money going after things that won't be. And that's how I ended up on the sleep specialist side of things, because there are at least medications there that are only prescribed for people with sleep disorders. And this all makes me sound like some crazed drug seeking attention seeker again.

Rachel

Right.

Sara

Well, back to that.

Rachel

Not to me, but not to me.

Sara

I feel like I am coming across really badly on this, but this is the reality of it. And of course, you can't fake most of these things. Narcolepsy is a sleep study where they hook you up to all sorts of gadgets in the lab and watch you sleep overnight. So you don't fake it.

Rachel

Right.

Sara

I mean, I do fundamentally believe a biological cause exists and could be, if not fixed, cured, at least treated, helped. And I have a lot of anger and frustration about the fact that it's not currently either in existence or accessible wherever it is.

Rachel

Right. It's unknown or there hasn't been enough inquiry to know it yet. Yeah. Either on your body, particularly, and also just in general research.

Sara

It's made me quite reckless in this current isolation of it. Like I am now. Just like, I'll order these random peptides off the Internet and inject myself with them. Let's see what happens. Because I did my own Botox last week. I'm just done. I'm very done with medical professionals and gatekeeping and having to convince some other human that my life is worth caring about before I'm allowed to access something that might help me.

Rachel

Right. I'm not a doctor, and so I hesitate to tread too deeply here. But it does feel like in these conditions in particular, that the first principle to do no harm gets turned very upside down because people don't want to try anything that doesn't have extremely robust research behind it. And. But there hasn't been that much research. And because these illnesses are so severe, it makes total sense that people are willing to try more or take more risks in the context of these illnesses. And obviously without endorsing.

Sara

Yeah, I'm not advocating.

Rachel

Yeah, it totally makes sense.

Sara

Why?

Rachel

I mean, I had the same experience. I think a lot of people do. I mean, I remember going to. So my kind of deepest prop was when I was, it was around 2018 when I was in the depths of also running my own company. And I had chronic diarrhea, like, all the time, every day for, like, years. And then I started getting, I was very fatigued, and then I started getting full body hives just every single night.

Sara

That's really fun.

Rachel

And I remember going, like, similarly at that point. I didn't have a lot of time and I didn't have a lot of money, but I did have insurance and so I just, like, did this whole specialist tour, and so I. But I just remember, like, going to the allergist and them doing, like, this skin prick test and be like, yeah, you're. Looks like you're allergic to dust mites. And, you know, try to put some additional sheets on your bed that are like dust mite prevention. Yeah. Sometimes people just get hives. I don't know. That's just. We don't really know why it's called idiopathic. Right. They said, like, the medical word, right? What is this? This is, like, an intense reaction every day. Like, what are you talking about? This just happens, you know? Yeah, yeah. But similarly, I had the experience. I want to draw this out because I think it's really common, too, like, each specialist zeroed in on whatever it was that they specialized in.

Sara

They're part of the elephant.

Rachel

Right. It was allergies. I did have allergies.

Sara

Yeah.

Rachel

But, yeah. Don't know. It's just hives or it's just. It seems like you have a stressful job. I mean, the thing about the stressful job, and I want to talk with you about this because I think it's parallel to your experience. I still am processing it, and I do this a lot in my writing because on the one hand, I seemed so infuriated by all those doctors who told me it was the stress and it was the job. And on the other hand, I do think that that stress and the way I was working did play a role, and I have a hard time kind of balancing those two perspectives.

Sara

Yeah. Yeah. Because. Same. I completely burnt myself out with the combined denial and stressful, like, pushing myself business. But I was already sick. And I think maybe part of the problem is that feeling of, like, are you saying this to all the other patients, too? Are you saying this to someone who comes in with diabetes? Your job stressful? I don't know. I don't know. I don't have a tidy answer for it. And also because you get so much amazing stuff from your job as well, when it's the right fit. Right. It's identity and it's self esteem and its connection and its fulfillment. And so it's not a simple thing to say, well, your job is too stressful. So that's the problem. It's a big ask of someone. It's like having children is stressful, but we never say to people, oh, it sounds like your children should dissipate for a while.

Rachel

Right? Yeah. And also, I wonder how many men are told that it seems like their job is too stressful.

Sara

Yeah. Yeah.

Rachel

I always wonder about that. And maybe they are. I don't know. I haven't gone to the doctor as a man, so I don't want to jump to conclusions. But I also. It's part of that whole wondering and the whole insidious self doubt and then anger and the, you know, the circle of anger and self doubt and.

Sara

Yeah, and the self blaming. Oh, well, then I work too hard. My fault.

Rachel

Yeah.

Sara

But I'm also lazy. The same thing.

Rachel

Somehow I'm working too hard and I'm lazy, and I'm a major attention seeker. I just can't get it right there. Yeah. You've particularly talked in your writing about invisible disability, and I think that's a really important topic and how that carries a specific set of challenges. Obviously, every type of disability carries its own set of challenges. But I'd love to hear a little more about your experience with this invisible disability and particularly the effect it's had on the relationships in your life as you try to communicate what's going on with you.

Sara

Yeah, it is tough in a different way, for sure. So I used to work in special needs and healthcare, in speech therapy. So I was very familiar with physical disabilities and some of them. Not personally, but obviously some of the ways that can be super, super challenging and had no idea, really, about invisible disability, despite living one with myself, unbeknownst to me. I think the hardest part is that you constantly feel like your abilities are being overestimated by everyone around you, and your choice is to either mask the true level of your sickness or explain yourself or be judged. Well, the judgment might happen either way, I suppose. So. You know, I would be going to these, like, big influencer events or things at Instagram, and I'd be really struggling because everyone would be standing up and socializing, and I'd be thinking, I'm gonna faint when my feet had gone purple. And then you think, what do I do? Do I tell everyone and say, I have this thing that you've never heard of that you might not believe in, and I need to go and sit down? Or do you just try and pretend that you're okay and then pay the price for days afterwards with the rebound fatigue? And even I would say, like, even with my husband, who's seen directly all of the ways that it plays out, you know, the consequences of me pushing myself too hard. He sees them more than anyone. And there's been points in my life where he's had to be, like, a full time carer to me, he's had to wash my hair, he's had to do everything. And even he. It took a long time for him to be able to not ask me, you know, he'd be like, well, can you just go and get it? You know, can you just move that table? Can you just. Because I look like I should be able to. I look fine. I've been thrown out of the. For the disabled. The disabled queue for taxis, the shorter cue, but because I don't look disabled, like, so there's like a different level of shame because you assume again that everyone thinks you're an imposter. I mean, so many of the things I'm talking about here really are just me worrying about what other people think of me and I feel like if I could drop that, I would be able to spare myself so much anxiety in life. But it does matter. And I think I know the worst of what people might think because I used to think it. I used to not believe in these things and we need to fit in.

Rachel

Yeah, I mean, and I think it's just almost human nature to concern ourselves with what other people think of us. You know, obviously there are ways to make that a healthier or less healthy preoccupation, but I think that's a huge part of this experience. Yeah.

Sara

I mean, how's it been for you if you found that it affected your relationships?

Rachel

Yeah, well, I have this image of myself. I remember when I was running my company and I would go to these massive, massive trade shows. My company was also in the healthcare space. It was a health tech company. So I would go to these massive trade shows with like 60,000 people in a huge conference center in Las Vegas. These massive things where there's, you know, and I'd be trying to go meet, network and meet people to sell our product. And you have to be high.

Sara

Energy all the time.

Rachel

Yeah, like standing at a booth, you know, and I would get so physically kind of nauseous and often get colds and things in the lead up to these just from the anticipation and then when I was there, so I never had the level of fatigue that you're describing. I could make it through the day and it was a huge push for me. This is why I think my work did contribute to making me sick because I felt ill the whole time, but pushed through it with coffee and everything. And then I would sneak back to my hotel room and climb into bed at 7: 30 and people would be texting like, hey, are you going to this networking event? That networking and I'd be texting back lies like, oh, I'm out with blah, blah, blah, trying to appear normal.

Sara

Yeah, that's what we are, that's the word I would use in my head.

Rachel

Yeah. Right. Normal. Or is that normal? I mean, it's kind of an insane thing. It is insane, but it's like, but it's considered normal. So, yeah. Yeah. I was absolutely doing the same thing, you know, as you trying to hide it. And I also, I don't think, and maybe this is me still not able to accept what happened, but I actually don't think I would, I would describe myself as disabled at that point. You know, my fatigue wasn't as severe as you're describing. And I had, I struggled with a number of other symptoms like the rashes and everything, but I wasn't, I wasn't disabled, but I did have limited energy compared to the peers around me, and I absolutely felt like it was my fault. And, you know, I'm still untangling that. I mean, that's a lot of what I kind of have worked to try and heal over the last few years through writing, and that has been really wonderful. And actually, it's something I wanted to talk to you about because, you know, a lot of the women I've spoken to in this series also write about their illnesses as a way to process, and you've written about yours, too. And also, you, you know, you have a lot of followers and a lot of people whose eyes are on you. And I am curious how you think about sharing about this publicly, whether you like to kind of process things that happen and then you write about them later or whether you like sharing things real time or whether you've experimented with different ways of sharing about it and have found some work better. I'm curious how you think about that, as someone who is really in the public eye.

Sara

Yeah. It took me quite a long time to feel like I could share it at all. And I think that speaks to, like, the things we reject about ourselves as the last things that we want, that we expect other people to accept about us. Right. So I hated it. Why would I want to spend time even focusing on it and writing about it when I hated it so much as a reality. But the more I sort of dipped my toe into talking about it, the more I realized just how many people it resonates with because so many, so, so many of us are dealing with things on this spectrum. So many of us. And I actually found that, like, rewarding in the sense of it's always wonderful to write something, and you feel like it's been helpful for other people, but also, like, such a relief to connect with other people and hear their stories back and feel less alone in it. So I think actually, it's interesting. No one's ever asked me that question specifically. Normally, I'll say the stock answer of, like, oh, yeah, I'll write things when they're raw, but I'll sit on them and I won't publish them until I feel okay about it. But actually, sometimes with the health stuff in particular, I do publish it when it's still raw, especially if I'm angry, angry writing. I like to publish in the moment because sometimes that emotion needs to be heard, like, it deserves to be heard. And sometimes it's never going to see the light of day, and it's way too raw. And I've even at one point, like, made a tumbler and started to write on that anonymously for all the things that I wanted to say and just thought I could never. Yeah, I think the more I realized I'm not alone in this, the more I felt like it's, you know, I'm fortunate to have an audience and a platform and then to think, like, what do I wish more people knew about this as not just the people who are sick, but also the people who are interacting with the sick people in the world. Like, what do I wish I had known? And I just think there must be so many people out there who are kind of in that denial, coffee drinking, duff it down, pretending everything's okay, that someone needs to say, hey, the way you feel right now is not, you don't have to feel that way. You deserve to feel better. You might not be able to fix it. You might still feel that way, but you shouldn't.

Rachel

Yeah. And that moment of basically saying, like, I'm worth it. I'm worth feeling better than this. It's a really common, like, plot point in these stories, for lack of a better word. It's something I didn't realize until I started talking with folks on a regular basis. But there's so many people who can actually recall the moment that happened. I was sitting on the couch, and I just had this realization, like, I'm worth it. I've heard that a number of times, and it does beg the question. It's like, well, why didn't we do that originally, you know? And now as a parent, it's like, how can I raise kids who? Who just thought that from the get go? And I don't have the answer, but I think it's an interesting question.

Sara

Oh, my goodness. And then parenting plays into this so much. My daughter, she's eleven now, so she's not far off the age where I first started to experience symptoms. And then there's these question marks about hereditary ness of all these things. Right. I look at her every time she's tired, every time she crashes, I'm like, is this normal? Is this the start of it? Like, yeah. How do I tell her? Because I don't want to normalize it for her and say, oh, you're just tired. It's not a big thing if it is a big thing.

Rachel

Right.

Sara

But also I don't want to make her like a hypochondriac and terrified of her body. It's really tough.

Rachel

Totally. It's just like a balance. It's going to be hard to strike. Yeah, yeah, I foresee that too. Already. Yeah. I really don't want to put my, you know, everyone's sick worldview onto my kids. It's not true. It's just true about my personal world right now. Yeah. And with that age too coming to that age, it's like I could imagine you just having a really, having to be really thoughtful and intentional about how you bring up the topic or even think about the topic yourself. Yeah.

Sara

And I don't know what normal energy for a young teenager looks like because that was not my experience. So I can't even. I don't know what. There's no book on this. I'm like, I've googled it. It doesn't tell you.

Rachel

Oh, man. Yeah, yeah. I've googled it and it doesn't tell you it is kind of like the way to encapsulate.

Sara

That's the name that should be the name of my tumblr. With secrets.

Rachel

Yes. No, it doesn't tell you. As we come to a close here, I'd love to just talk a little more directly about success and the idea of success. You've had this business, this successful business, and been successful in all the kinds of conventional ways. I could name your number of followers and give all this evidence that you've been successful and now maybe you can't do it the same way. And I'm curious about that, you know, if you can talk about how you think about success right now and how that's shifted.

Sara

Yeah. It's a grieving process that I'm still in, if I'm really honest, because it was so much fun. It was so much fun. It was everything I thought it was going to be. And more. And I think the biggest, like the biggest thrill of it was that it's so affirming, right? Like, it's like you, just like you imagine it would be lots of people appreciating your work, people from like newspapers that you've grown up reading and things like that is. Is so affirming, especially if you're someone who spent 30 something years not even believing you deserve to feel okay in your body. Like, it's a heady experience and I wasn't done with it. But also I can recognize, like, it was always going to end in that iteration of it at some point, one way or another anyway. And I think it's kind of like, you know, having. Getting drunk or something. It feels good at the moment, but it's not really fixing your problems.

Rachel

Now you've got the hangover.

Sara

Yeah, exactly right. Like, you can't keep drinking forever just to avoid the hangovers.

Rachel

So you view it as like it was, it did feel really fulfilling, but you view it as more of a rush, more of a temporary rush with maybe at some cost. And

Sara

Yeah, and I wouldn't change it, even though I think I did make myself worse. But I've been pushing through in my nine to five job before that as well. And that didn't give me nearly as many rewards. So, yeah, I don't regret it. But it's the shift in your identity because chronic illness robs you so much identity anyway. Like, it's changed how I look, it's changed how I move, it's changed my relationships, it's changed my life. Like, how I see myself. It's changed everything. And then my business was such a big part of my identity and it's changed that too. And it just feels like, is there anything that I get to just have the way I want it to be? And the answer is no. But I still get to keep the pieces of it. I really love and redefine this idea because for so long I used to talk about different definitions of success whilst I was there enjoying the conventional definitions of success, I have to say, but saying that you don't have to. And now I'm having to live that and go, okay, what can success look like with 3 hours a day maximum at my disposal? What will feel like a success within that and downgrading what my idea of success is really, because there is no notion of success on that previous scale that you can fit into 3 hours a day. But I can still provide for my family, I can still live an amazing life. We bought a house in France that we're renovating. We've still got so many amazing, privileged, wonderful things that my work allows me to do.

Rachel

It's just different when you move into that house. I've read you're going to turn into a kind of perfectly healthy, for sure, you know, extremely relaxed french girl. Yeah. If you haven't read Sara's my future fictional french shelf post, you really should. It's a work of art. It really encapsulates the tendency we all have to imagine that if we only make one change or just lived in a bigger house, we would be this other person and have no problems. And I thought that was just so artfully done.

Sara

Thank you.

Rachel

So I really hope for you that when you're done with your renovation, you become that person, because that's usually what happens.

Sara

I've seen a lot of films and they all had happy endings, so I'm pretty sure it's going to happen for me, too.

Rachel

Yeah, well, that's really airtight logic, so can't argue with that. This has been an absolute joy. I would like to end with just a question about the future. So now you're going through this transition into a quieter version of success, as you put it. And I'm curious now how you balance hope about the future with the reality of being sick, and particularly being sick with something that you really don't know the direction it will go in. The prognosis.

Sara

This is such a good question. I don't know if I have a good answer for it because it's the heart of all of it for me. How do you have acceptance and still have hope? And the best I have come up with, and this was with help from my coach. She was like, think about how there's a banana, and it just is. That banana just exists in front of you. It just is. That's how I try to look at my day to day reality of being in my body. Like, okay, today I have this many spoons, I have this much energy. It just is. But who knows tomorrow what the banana might be like?

Rachel

Probably just love that it's a banana, because there's no rhythm, no reason at all. I know.

Sara

And then the whole analogy expanded. I was like, but I want to be an orange. Like. Like, tomorrow is probably still going to be a banana. But it could, you know, who knows, right?

Rachel

Who knows?

Sara

Who knows?

Rachel

Yeah. That's kind of the little glimmer of hope.

Sara

Who knows?

Rachel

It's a banana, but who knows?

Sara

Who knows? And if I inject it with a little ransom, Internet peptides might be a magic banana. Yeah, I don't know. But I do have hope. I feel like AI is going to revolutionize the whole way that medications, existing medications are considered and applied. I think it could really transform how doctor consultations happen. I think it could fix or at least change a lot of the problems in the system right now.

Rachel

In what way? By being more objective? Or how do you see that?

Sara

So there is an AI kind of similar to chat GPT consultation thing online that is made for medical professionals. The idea is it's used in conjunction with their training and knowledge. And I typed in my symptoms into that and it came up with a list of things, tests and things to have me done. And sleep study for narcolepsy was right at the top of the list. Well, it's taken 40 years to get there with actual doctors.

Rachel

I'm so grateful to Sara for her honesty and the humor she's able to bring to this topic. I had a lot of fun doing this interview. There are parts of it that I'll be thinking about for a long time. In particular, I'm going to wake each day and imagine my day as a banana for some unknown reason. You can find more of Sara's wonderful writing at meandorla . substack.com and additional links of hers will be in the show notes. You can find my writing and this special series at raykates . substack.com. that's r Dash dash a dash . substack.com.