Look, there are some things in life - a LOT of things in life - that just can’t be fixed or made better, you have to figure out how you’re going to live with them.
Sarah Ramey spent DECADES trying to find answers for why her body was falling apart. Her book, The Lady’s Handbook for Her Mysterious Illness, describes the complex, convoluted path through conventional and alternative medicines, her frustrations with being deemed a liar and hypochondriac, and the overlapping issues of misogyny, ableism, and well meaning but unhelpful support.
If you’ve ever felt othered and invisible because of an illness or disability - this episode is for you. If you’ve ever loved someone with a chronic illness, or you’re a medical provider in any capacity, this episode is 3000% for you.
And if you’re grieving some other loss or hardship, you’ll recognize so much of yourself in this conversation: that human desire to be seen, loved, and supported, exactly as you are.
In this episode we cover:
We're re-releasing some of our favorite episodes from the first 3 seasons.
Looking for a creative exploration of grief? Check out the best selling Writing Your Grief course here.
Follow our show on Instagram, Facebook, Twitter, and TikTok @refugeingrief and @itsokpod on TikTok. Visit refugeingrief.com for resources & courses
About our guest:
Sarah Ramey is a writer and musician (known as Wolf Larsen). Her work has been featured in The Paris Review, NPR, The Atlantic, The Washington Post, Ms. Magazine, and the Netflix show, Wednesday. Her book, The Lady’s Handbook for Her Mysterious Illness was a starred selection for Publisher’s Weekly, Kirkus Reviews, and Booklist. Learn more at sarahmarieramey.com and wolflarsenmusic.com.
Sarah has been living with serious chronic pain and illness for seventeen years.
About Megan:
Psychotherapist Megan Devine is one of today’s leading experts on grief, from life-altering losses to the everyday grief that we don’t call grief. Get the best-selling book on grief in over a decade, It’s Ok that You’re Not OK, wherever you get books. Find Megan @refugeingrief
Additional resources:
To join the next embodied writing course mentioned in the show, sign up at roottherapymaine.com
Read Sarah’s memoir: The Lady’s Handbook for Her Mysterious Illness
Listen to Sarah’s solo album: Quiet at the Kitchen Door
Want to talk with Megan directly? Join our patreon community for live monthly Q&A grief clinics: your questions, answered. Want to speak to her privately? Apply for a 1:1 grief consultation here.
Check out Megan’s best-selling books - It’s OK That You're Not OK and How to Carry What Can’t Be Fixed
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I hope it gets better, but let's just assume that it's not going to. How can I take these like very narrow parameters and try to make the best of this pretty Darryl situation? How do I try to make the best of that? Because for me, it's like, well, what's the alternative?
This is it's okay that you're not okay, and I'm your host, Megan Devine. This week on the show, musician and author Sarah Raimie on living with complex chronic illness. Look, there are things in life, a lot of things in life that just cannot be fixed or made better, and you have to figure out how you're going to live with them. If you've ever felt othered or invisible because of an illness or a disability, this episode is for you. If you've ever loved somebody with a chronic illness, or you are a medical provider in any capacity, this episode is three hundred thousand percent for you. And if you're grieving some other loss or hardship, you will recognize so much of yourself in this conversation that desire to be seen and life loved and supported exactly as you are. What I'm saying is this is a conversation for everybody with a body, settle in everybody. All of that coming up right after this first break before we get started. Two quick notes. One, this episode is an encore performance. I am on break working on a giant new project, So we're releasing a mix of our favorite episodes from the first three seasons of the show. Some of these conversations you might have missed in your original seasons, and some shows just truly deserve multiple listens so that you capture all of the goodness. Second note, while we cover a lot of emotional, relational territory and our time here together, this show is not a substitute for skilled support with a licensemental health provider, or for professional supervision related to your work. Take what you learn here, take your thoughts and your reflections out into your world and talk about it. Hey, friends, So you probably know Sarah Ramy's work without knowing who Sarah Ramie is. If you watch the hit show Wednesday on Netflix, it is really good. If you haven't watched it yet. If you watch the show, you heard Sarah's song if I Be Wrong in the opening sequence of episode seven, but before there was a call from Tim Burton and opening song credit acclaim Sarah Rami spent years trying to find answers for why her body was falling apart. Her book, The Lady's Handbook for Her Mysterious Illness describes the complex, convoluted path through both conventional and alternative medicines, her frustrations with being deemed a liar and a hypochondriac, and the overlapping issues of misogyny, ableism, and well meeting but unhelpful support. Now that is a mouthful. I know I said it, and even I was like, this is a long list. But that's what chronic illness is. It is a complex, confusing, often mysterious constellation of symptoms that nobody seems to be able to figure out if you can even make them try. Now, I read Sarah's book earlier this year on the recommendation of a friend that Sarah and I have in common, and my copy of her book is so heavily highlighted and annotated. I basically wrote an entire book of my own inside her book, but from the outside, a book about chronic illness and how much we just don't believe people when they tell us what's going on in their bodies. Like from the outside. That sounds like a really hard book to read, and it is. But Sarah's book and this conversation that you're about to hear, they're both so life affirming. It's not like positive thinking everything works out for the best, life affirming way, like you should know me better than that by now everybody, but life affirming in the way of you will see yourself in the pages of her book. You will hear your self in her words. Life affirming sort of thing. Reading The Lady's Handbook turned on so many light bulbs for me personally. It lit up a creative spark in me that has been dormant for a long time, which yea. But two, it brought me back to my twenties when I lived through my own chronic illness. Just hearing her talk about the gaslighting inherent in the medical system, how lonely it felt to be sick and having doctors just dismiss me because they couldn't fix what was wrong. Like reading that part of the book was like time travel medicine for me. There's something so powerful in being seen in the truth of what happened to you, seeing that through somebody else's words. Now we jump into our conversation really quickly. I was really excited to talk to Sarah, So a little bit of background for you. Sarah has multiple chronic illnesses, and she gives you a list of what some of those diagnoses are towards the end of our conversation together. In addition to being an advocate for people with chronic illnesses and being a writer, she is a musician recording under the name Wolf Larsen. So remember I told you that you've probably heard her music. In that hit show Wednesday, we talk about the difficulty of navigating the music industry when you have a hit song and you also have a disability. We get into how much grief is involved in being sick and how important it is to find a community who sees and supports you exactly as you are. There are so many connections between grief and illness friends, from finding a doctor who doesn't tell you to get over it already, to how exhausting it is to have to advocate for yourself again and again and again and again. Whether you have chronic illness or not, this episode will help you feel seen and supported and possibly even make you a better listener. Just across the board, that is a lot of pressure for an episode, but it's all in there, and I can't wait to hear what you think. Sarah. I am so glad you're here. I've been sort of stalking you in your work for a few years, so I'm really, really so excited to have you here.
I am excited to be here too. I like you so much, so I love when I get to have a conversation with somebody that I really like.
That is awesome. Okay, So I talked a lot about your book and your music and some of the intersections with my own life in the introduction, but so much of your writing is about making the invisible visible. I was trying to figure out where should we start, because there are so many things that I want to talk about, but I want to start in a way that lets anybody who feels invisible feel seen and know them like this is for you, my loves, Like, where do we start our conversation if we want to help people who feel invisible feel visible? Right from the top.
So, my work or my book is all about this family of illnesses like chronic or MACFS, chronic fatigue, syndromiologic and cephalomyelitis, but also fibomyalga and massile activation and postural orthostatic techocardia and lime and this family of predominantly invisible illnesses that have historically been dismissed or diminished or disbelieved by not just by doctors, by the people that you need the most. Normally, when you get sick, you know, you immediately sort of activate your support network to come and help you. But with these illnesses that's actually quite difficult to do. So so much of the experience of having one of these illnesses is sort of having to like turn yourself inside to make everybody else be able to see what you can feel but they can't see. And so for me, you know, I've had to do that much in my personal life. But that was the purpose of writing the book, is to turn all of our experience inside out for other people and for them to be able to feel, for the reader to be able to feel seen like if they're you know, one of us, but also for their friends or their family or their doctor to be able to see that experience that is so difficult. You know, there's no external thing, there's no limp, there's no you know, giant boil on your face.
That yeah, you don't look sick.
Don't look sick. And it really is true that if I did have a giant boil in my face, that nobody would be like, oh, I don't buy it, you know, like nobody would say that anymore. They would just even if that was not even by a long shot. The most problematic issue that I have, like if the boil on my face could have been completely asymptomatic, except it looks bad, but it would provide this layer of sort of understanding that's very difficult to come by if your symptoms are invisible. But also if medicine hasn't done its job to educate, you know, the community about Yes, this is a real disease. These are the symptoms. Here is what friends and family need to be doing to help this person, because that's normal. That's the infrastructure that supports every other major illness, but not these because they've been so disbelieved for so long. That is changing pretty rapidly, which is wonderful to see. But I mean it's you know, forty years overdue, so.
At least forty years overdue. So my copy of your book we were talking before we got rolling here, that my copy of your book is like covered in margin notes and highlighted passages and like stickies and exclamation points everywhere, and that reading it really set off the creative spark in me again that has felt like it wasn't there for a while. But it also brought me back to my twenties when I was like in school and studying Wan's history and medicine and the ways they intersect right while navigating my own invisible health issues back then. And it made me realize that I was I'm not sure how you how you envision it being pronounced, but I pronounce it when I read it. Woe me?
Yes, who right yact? You got it?
So can you tell me about that acronym?
So the way I started this whole thing off is to say, I wrote a book that's about this like collection of essentially, uh, you know, the entire alphabet of you know me cfs and potts and mcas and etceterastet etcetera. There is no umbrella term for these illnesses that are clearly related. You know Ailor's danlos eds. You know, there's so many different illnesses that that are clearly under sort of the same neuroimmune and crine umbrella. In my opinion, and because of that lack of sort of unifying terminologies, I I just started calling us woamies, which stands for a woman with a mysterious illness. But there's also mommies, a man with a mysterious illness upon me a person with serious sounds. So one can make it there on.
Right and choose your own acronym adventure And.
It's just a way to talk about this family of problems that is clearly a family of problems. Nobody that studies these issues is like, oh, yeah, they have nothing to do with one another. Everybody that's seriously looking at this from a scientific perspective, it's like, well, yes, they do clearly all run together in a family. How they're connected and related, you know, that's a lot more complicated, but that they are, it's definitely real.
I was reading that section in the book this morning again where you talk about the origin story of that acronym, and like, I love that you say, like I needed a word that had enough impact and enough weight that would evoke the proper response from my friends and family and from the people who are trying to support me, like something that like are and I love that you say, Like you wanted an official word that provoked the right response to your illness, and the right response was holy fucking shit.
Yeah, I don't know that. I don't know that Womi does that, but at least it's something. It's Tuesday. It's a word because when you just say to people when they're like, well, what's wrong, and you're like, well, I don't know. I mean, this is another sort of function, or another facet of these illnesses is that it takes i mean years, if not decades, to get a diagnosis at all, and so when you can't tell people what is happening for you, that creates just another enormous barrier between you and them because it sort of opens the door for them to not believe you or to back away because they don't know what to do. So Womy that just helped me to start talking to whoever was interested about this phenomenon. It's not just me, this is not just this unique thing that is happening to me. That always felt very important to explain to people that it's not just like Sarah Raimi and her like super unique problem that nobody in the world can figure out. Even though you know the particulars of my issue, are definitely unique to me, But the overall phenomenon of dealing with the horrible fatigue in my alges and digestive problems and sensitivities, that's not unique to me whatsoever.
No, And there's there's so much packed into this with like women coming to the medical profession for help and assistance and being basically gas lit and not believed and dismissed right like hysteria and all of these things. Like you mentioned when we first started talking, how difficult it is to convey to the people who love you and want to support you what's actually going on for you. And then you take that sort of language gap, description gap, and you bring it into a medical industry that if they don't actively hate you, they don't bother trying to learn who you are and what's happening.
Yeah, this goes far beyond Willmingdom. It's extremely acute in when you have one of these illnesses. I really think that they're sort of some of the most mistreated illnesses within medicine. But what you're describing is something that you know, women experience, that people of color experience, at LGBTQ people experience. It is unbelievably common to be and then people who have, you know, sort of no layers of marginalization also feel that way, just not to the extreme degrees that everybody else feels them of just feeling that what you're saying either doesn't matter to this person, that you're just sort of on this conveyor belt that has coming in and that they are trying to get out, like as fast as possible, but not without a stop of the billing counter. And there's just this incredible dehumanization that has sort of taken over medicine that I think compounds the problem. So if you also if you're in that type of medical environment and you have a problem that is disbelieved by medicine, I mean, it's just it's it often feels like why did I Why in the world did I come at all? Why am I paying even a single dollar to be made to feel like I am a worthless, bad person who's a liar and a malingerer. I mean, like this is it's one thing to not be able to help somebody, but to also send somebody away more harmed, feeling like they that there's something wrong with their personhood, with their who they are as a human being. I mean that is. I always get so worked up about this because I'm like, whenever I speak to doctors, I always say they're like, well, what can we do about this? If there's so little research, you know, what can I actually do in my practice to change this? I'm like, well, are you believing your patients when they come in? Are you making an effort to make them feel heard and that what they're saying is valid and that they're suffering valid? And they're like, well, I don't know about that. I'm like, that's that's all you need to do. Start you can, because you know, the oath is do no harm, and you are doing harm when you are making somebody feel like smaller, like a bad person, like a liar, like you're making things up. But all of these things that are not true for these patients. My experience is always like when a doctor, it just gives me the barest minimum of like respect. It's like all I can do not to like leap over the desk into their arms to me, like, right, the bar is low as it is as low as it could be, and but you have to start somewhere. And so I really do think that it's not a small thing because sometimes people are like, oh, that's just like you wanting to be have your handheld by the doctor. I'm like, no, no, no, no, no, no no. First of all, if you're saying that you've not experienced before, because that's not what I'm asking for. But belief, that's the bottleneck. If you have a you know, millions of doctors that do not believe these patients at all, then those people, those in their communities are they're not going to apply for research grants. They're not going to do any of the work to generate these scientific data that would help us have treatments that would help us have descriptions of these problems and protocols, et cetera. So belief actually, in my opinion, that that is the most important place to start, because you can't make any progress if you don't believe that these are real problems.
Yeah, Like everything spools out from yes, believing somebody's what they tell you. I mean, this is like I'm just going to jump in for one second here, because like, this is true across the board. This is true with health issues that are understudied and underfunded. This is true in sexual violence awareness and educations. Right, Like you have to start with believing what the people living in are telling you. Nothing else can happen unless you listen and you believe.
Exactly and like, of course it's you know, are there hypochondriacs? Of course, are there people who are not time to try, of course, But if you've got you know, millions of people saying exactly the same thing over and over and over and over again, this is not a case of like mass hypochondria, Like that's just so ludicrous to think that that's the more reasonable explanation for what's going on, not that they're actually exactly what they say there, which is sick and suffering in the need of help. So I couldn't be a stronger advocate of just starting with the thing that is the easiest, that belief that can be changed overnight, no research, no funding has to be released for this, you know, yep, you can do that to day. If you're a doctor and you're listening to this and you're like, I don't really believe those people, Like that's something that you could you could go to therapy, you could talk through why you don't believe these patients, right, Like that is something that you can do as a doctor that I am just telling you has the most profound effect. I think most people like me don't even expect to get real medical treatment like medicines or anything like that, because we've been so let down by medicine. So just to have a doctor that is like I care about you, I believe you, is medicine. And so because it's free and it can start right now, I really think that that's the most important place to start.
I love that, and I even love the idea of for therapists, or for medical professionals, or for friends and family. It's a very interesting and very simple social experiment. What would change if you believed what they're telling me? Right? What would you do differently? How could you find a way to be curious about the person in front of you if you simply believed them? And this, like for me, this is like the core of grief work too, write with like, believe the person in front of you. Don't try to tell them one it's not happening, and two if it's happening, it's not that bad. And three that if they just drank more green juice and thought the right thoughts, everything would be okay, right, Like you wrote about this a lot too, that intersection of like you know, in the book, you're sort of pingponging back and forth between what we understand as mainstream medicine but allopathic medicine with all of its hostilities and refusal to understand. And I think sometimes we get like cause you know, we love binaries, even though binaries don't work for humans in any way. But like, Okay, if traditional allopathic medicine doesn't really get it well, then obviously the alternative or integrative health system would be better. And that isn't accurate.
Well, which doesn't mean that either of them are all bad, right, neither of them are all bad, but it is very common. Like if I think it's a I think it has to do with like it's so scary to leave your tribe, and so like if you grow up in regular medicine and then you defect because it's not helping you and you leave to basically pursue alternative medicine, I think there's this need to like prove to everybody else around you. I know that I felt this way that it's right, that you're doing the right thing and that it's all right, and that regular medicine has got it all wrong. This thing I'm doing over here's got it all right, And I understand why I felt that way, but it but that was only at the beginning that I felt that way and then started to go, you know, deeper and deeper into alternative medicine and realize that there's in many ways, alternative medicine is a replica of alopathic medicine in terms of especially that idea that like everything can be fixed with a magic whatever, like whatever it.
Is, so an insert magic item here.
Exactly, and that that is you know, you'll go to a chiropractor and there like everything can be fixed with you know, my protocol here, and then you go to a homeopath and they're like, oh, that's all bullshit over there, but what really works is this blah blah blah blah blah. And in the beginning, you know, you're you're like, oh, it does this is Oh, you must be right about this. That's the way I was. I'm very open to leaving people in the beginning. And it was just after I had seen so many different alternative medicine practitioners and they all said that that I started to realize like, oh, oh dear, we're oh dear, we're just this is a big, chaotic industry that is helping a lot of people. That's very real. It helped me in a lot of important ways, that's very real. But it also has a lot of the same problems or different problems that than regular medicine. And it's just it's very important not to you know, put either I think, up on a pedestal, you know, and and then because you've put the other one on a pedestal, to have to like have to look down in the other one, because both sides do this, and I just think that the a much healthier I always sort of this is I think in my nature is always to be like, well, let's look good, Like what's the good in both? Like can what what can we take away from both? And then what are the problems in both? And just trying to be not even handed, but just not blind to what the problems might be in whatever path you're pursuing, to just understand that they're both. We have we have a big chronic health crisis in this country and we don't have our arms around it yet. And that's it's okay that that that's the case, and it's okay to be uncomfortable with not having all the answers to everything.
Yeah, I think that the humility for any provider to be able to say it's really complex, and some things work for some people and they don't work for others, and combinations of things work, and it's exhausting. Yeah, Like I always love the approach of naming what's real, right, Like, it's exhausting. It's exhausting to advocate for yourself at every turn. It's exhausting to get yourself to endless appointments not knowing the hostility level of the office you're visiting. Right, And again, this is true when you've got physical health things. It's also true with emotional health things. We've been talking with author and musicians Sarah Raimi about disability and what it is like to be chronically misunderstood. Let's get back to it. There's something you said about alternative medicine and it made me think of, like with both allopathic medicine and integrative or alternative medicine, Like there's an overlapping ven diagram in both approaches to medicine, and that overlapping Van diagram is it's all in your head, right, Like, there's something in that sort of approach of allopathic medicine to like it's all in your head, you're making it up, it doesn't actually exist. Go away, you're bugging me. And for integrative or alternative medicine, it's almost like they say, yes, it's all in your head and it's having a real impact on you. But if you change the way you're thinking about it, you can change your body. Like it right, you can do anything, which you know, just is so infuriating. And again like this this idea that like you can do anything you set your thoughts to, is so pervasive in physical health, in emotional health, in relational, communal, social health, like we have limits and it is okay to say that.
No, I mean, it's just it is extraordinary. I honestly, I think a lot of it comes down to when somebody builds their economic model around that essentially like that I can help you. And so all you have to do is, you know, think all of these you know, positive thoughts. You can't it's very difficult to sell that well maybe I can help you, but maybe I can't. You know, like I think that that for a lot of people, you know, people aren't like, well I want to here's my June ninety seven.
For R you know, it's a hard sell, yeah, and.
So it has to be kind of all or nothing. It's like, this is the thing that if you just sign up with me, I'm going to cure you. And all you have to do is just fix every thought that you have from now until the trinity. And that's all I have to do. And you know, it's so interesting because I do think that like all of that it comes from, there's always like a like a kernel or more than a kernel of something that's that is helpful and important and empowering there about you know, it's important not to be fatalistic, you know, about that your thoughts, to be able to work with your thoughts to try to get yourself into a better place, like I do. I think that that is correct. But then taking this to this extreme level of you you can cure anything, any physical ailment, anything at all by just thinking the following thoughts over and over and over again. Is just so painful for the patient because that is not true. But if you take on that belief, then basically it's like this like parasite that gets into your mind. That's just like if you have a single negative fact like oh my god, my god, my god, I'm creating my illness. I'm having pain in my body, and it's because I have shame about this thing that happened to me when I was a kid, and I have to you know, counteract that, and it just can, I think, can create this tremendous amount of It's not just like self doubt, it is self hatred. It's like I am creating this horrible thing that's happening to my body to blame that. It's a different way of blaming the patient, as you said, it's it's it's not upfront as it would be in a regular doctor's office where they're like, I am blaming you right now to your face. You're making it up. It's a different way of doing that that sort of unspools over time. That's just like I believe you, I love you, I care about you. However, you know you've got these thoughts and they're you know, maybe causing your illness, and then when you start to take that on as your own sort of worldview, it is very difficult to sort of get that out of your brain and to not blame yourself for continuing to be sick, which is that makes me so angry that like because it happened to me, so just like because I didn't feel that way prior to seeing those practitioners who told me that, and like really got it in my head that I was causing my own illness, and I really felt that way for a long time. And it's so upsetting because it's like so much of my life, you know, sort of spent hating myself for no reason for it because I sort of got bad data input but from somebody that I thought was, you know, doing a lot of a lot of good, and so it just so it was very difficult to sort of like disentangle that for myself to understand, like, okay, something to do that person doesn't know, doesn't know everything, and it's okay for me to reclaim that that's not true, that I may just be sick because I'm sick and because we don't have a cure for this yet and because we don't understand it, because we don't believe patience, and therefore we're not you know, putting the money behind these illnesses to study them, and that that it is as simple as that it has nothing to do with you know, my thoughts about my stepmom when I was a kid.
It's such an insidious shame cycle right there, that like there's that that invisible, unspoken second half of the sentence that I talk about in grief a lot with like if you're telling somebody you know, your thoughts create your reality and you have the power to turn this illness around and all of these things. Then if you are sick, you screwed it up, Like this is your fault if you're not doing it better. We gave you the tools. I get as angry about this as I do about when people talk about meditation that way, right, or mindfulness or any of these stuff. It's like you are trying to get those tools to do something for which they were not designed, right, You're sort of using these tools of liberation as a way to imprison people.
It is just rude.
It's just rude.
It is, but I mean that you really hit the nail on the head. It's like this thing that you're like, oh, this is a healing thing. This is like, you know, my understanding of this is that it's that it's healing and it's good and it's calming, and all these positive associations with something like meditation or yoga, which do have a lot of positives that come with them, but then when you attach onto them that they also are these miraculous cures and if you just do them hard enough, correctly, and often enough, then you can literally do and you are a superhuman being that can control reality. And it's like, of course, sometimes illnesses that especially illnesses that are related to stress and things like that, Yes, if you do things that take on stress, that reduce stress, and you're like, yes, your symptoms can go away or go into remission. And that's great. Again, all of these things. I'm not anti alternative medicine stuff at all. They are so important and in the absence of any real treatments like in traditional medicine, I'm all for trying anything that can help you feel better. What I feel strongly about is, as you said, attaching this little caveat onto it. That's like, instead of just telling them like, yeah, this is worth trying because you know, maybe we can help you feel five percent better, ten percent better. You know occasionally somebody gets all the way better. Great. Instead of just telling the truth saying that it's going to be this miraculous cure if they just try hard enough, that just poisons this person against themselves, thinking that if they don't get better, it's their fault. They didn't meditate enough, they didn't do enough tapping, they didn't do enough yoga, they didn't do enough with all of these things. And that is taking this thing that could be so nourishing to this person and turning it into like a way for them to beat themselves up. And I just it's going about it all wrong.
Yeah, what is it that is so terrifying about the truth that we have bodies that can't always be fixed, minds that can't always be fixed? Like what is so terrifying about that that we have literally built entire industries to pretend that's not true.
I mean, I think it's it's I just talk about this like this is especially true in traditional medicine. But it me just up the wall that patients that have these problems are told constantly that you know, it's something to do with them, it's in their mind, it's their psychological issue, they just need to go get more therapy, et cetera, et cetera, when in reality, what you are dealing with is the practitioner's issue, their own psychological issue that they cannot just hold what can't be fixed, or they cannot say that their ego is too like I often call this ego fragility syndrome EFS, that their ego is so fragile that they can't just say, you know what, I don't know what's going on here, I can't help you. That is painful for a lot of doctors to say, and I think the same for alternative medicine. Think it's a little different alternative medicine, but there's this need to be able to if you're in a like a helping or a fixing profession instead of a helping profession, this need like if you don't fix it, then there's something wrong with you. And of course that's not true, and nobody, not nobody, but certainly not this patient popul ocean does not expect that from you. And so I just always want to say to those people like, Okay, so I see that you're struggling with not being able to fix me, it's okay, You're okay, You're going to be okay. All I'm asking is for you to not displace that anxiety that you're feeling back onto me and say, because I feel so uncomfortable as the doctor not being able to fix you. I need to put this back onto you and tell you, you know what you need to see that they're is you need to go do some sort of psychological work. I feel like there's not enough time spent with the modern physician to teach them about being just like a container, like a somebody that can hold the suffering that walks into their office to just in a kind and compassionate way where you just assure that person that you believe them, that you're sorry that this is happening, and that you will do what you can do, and that's it, and that that is that is okay. If you don't know what to do or how to fix or how to cure, you do not need to then turn it around and say, therefore, if this is your problem, this is you the patient? Or have something wrong with you because I don't because I don't know how to fix you. But of course you can never have that conversation with the doctor because the power dynamic is so so imbalanced that it's very difficult to kind of like talk back because it can really boomerang back on you. Sometimes you can say I'm always like inspired when people do when they like write their doctor a letter and they're like, hey, man, you really damaged me by the way that you, you know, talk to me, et cetera. But it is just also reality that that can come back on you, and that they can write something in your try, they can say something to another doctor that then makes them disbelieve you, and blah blah blah. And so it's not it's not just this risk free zone that you're stepping into if you if you say something to help correct some of that behavior. So it's really tricky.
It's really really tricky and really complicated because you know, you if you talk about how poorly educated or how poorly award where your providers are again mental health, physical health, and you know you have these helpful friends and supporters who are like, well, you should say something, You should speak up right. I mean, we have no idea what the ramifications of that can be when you need to rely on this provider, this medical system to help keep you alive. Like how dangerous it is to be an advocate for yourself.
One hundred percent, especially when you're talking about patients who are really sick, who might you know take first of all, let's just be real. Let's say even new appointment with somebody that takes months to get in to see that person. Then you travel, let's say a long distance, you pay money to see that person. You do not have the luxury of just being like, hey, dude, you made me feel really uncomfortable and like, you know, like because that may help you help me that. Yeah. It just in a perfect world, yes, that would go great. They would be like, oh, let me adjust my behavior. But it is equally as likely, if not way more likely, that they take that very poorly there, like this is a difficult patient.
You know, sure you get labeled as difficults.
And so it just it is. It is really complex. Even though you want to say something like that that you would say in like the you know, film and TV adaptation of your life, you know, you would say some sort of like Aaron Brockovich type of you know, sassy comeback, but you really it's very difficult to do that in real life.
All right, let's get back to my awesome conversation with Sarah Raimi. There are two ways of talking about grief in my mind right now, Like we've been talking, you know, every time you're talking about the realities of chronic illness and mysterious illnesses, and like the same thing happens when you're you know, when you're grieving and you go to a provider looking for assistance and they don't believe you, or they just try to medicate you or tell you it's all in your head. So there's like there's that that there are so many overlaps in the chronic illness community and in the griever community. And I think something that we don't get to talk about often enough is how much grief there is in being sick.
Yeah, yeah, it's similar, but it's because being sick, you're sort of like continually losing things. There's just like new things that you can no longer do, or that you were hoping that this would be something that you would have gotten better by, you know, the time that you're you know, I'm forty two. I for sure thought that I would have you know, kicked this by now, and then you have like, for example, like I, you know, I'm forty two, Like I definitely am not going to be able to have children, And that's something that that's like a new thing to be having to really grapple with, which is something I'd always been like, you know, I eventually I'm going to get better, and just kept telling myself that and not not being like positive, just just like I just wanted that. I just wanted to get better. And because I didn't have a diagnosis that was like, no, that's not going to happen for you. It sort of leaves you sort of leaves the hope door wide open. And so there's as you kind of go along and go along, and you go along as somebody that has pretty severe chronic illnesses, there's just a lot of stuff you just sort of keep having to like, oh and say goodbye to and it's very painful, but it does require so many of the tools that you talk about and that you've written about. I mean, it's it's, you know, I just lost you know, one of my best friends, and that is a different process to go through. It's like much more acute, but it's also it doesn't keep happening over again in a new, all new, brand new way to have to lose a new thing. And so it's just they're just different. But I think I do think that they've got a lot of the same tools that you talk about in it, that you've written about so well in terms of coping with them.
Yeah, I like that distinction actually that you just made. It's like when someone dies, they are only going to die once, right, the impact of that death and that vacancy you will carry with you in different ways. And what you're describing is a new goodbye all the time, a new goodbye every time, a new death of something for yourself, over and over and over, and not better or not worse. That's not sort of the comparison junket we're doing right here, But just like the the pervasive nature of a long series of goodbyes when you're sick.
Yes, that's a really good good way to put it. Again, I know that I think we've talked offline about this, but again, this is one of the many reasons that like the sort of like extreme toxic positivity sort of push in the chronic illness space is so misaligned with what's actually happening, which is like it is not positive what's happening to you and trying to you know, wrap up, you know, a big stinky turred in a pink bow. It's just it just is not the way to move through that. You really need to be equipped with a lot like of course, generating hope and optimism, positivity. These are important skills obviously, but beering so hard in that direction is more painful in my experience than gaining the tools to be in the shit, to be in the pain, and to learn how to navigate that, because you are going to have to do that as someone with a chronic illness over and over and over and over again and new in different ways. And if the only skills that you've ever sort of learned are to kind of paper over it with positivity and optimism, it's not gonna going to help you enough. And it also you're just denying yourself real emotional maturity and real skills to help other people, not just yourself, but to be with other people and their suffering in their journey and all of these things. And so it's been good to see that this is something I used to feel a lot more strongly about until I would say the last like six years there has been like a pretty big backlash to the sort of positive at all costs absolutely and that, which is good. That's a corrective that was sort of a long time a long time coming, and so I've been happy, happy to see them.
It's such an interesting thing, like if you truly want to be of service, you have to stop fixing things and you have to start stop making them pretty.
Yeah.
As a writer, I always like sort of the difference between pretty and beautiful, Like pretty is this fake shiny bow you put on the shit sandwich, and beautiful is like this is what it is right now? Yeah, right, and allowing the fullness of whatever it is to be what it is right now is beautiful and it is not pretty now. You are a musician as well as a writer, and I think this is a this is a good segue add on whatever to a conversation about grief and a lot of goodbyes. But like, one of my very favorite songs of yours was used in the Netflix show Wednesday, which I was so excited about. I did not know that was coming. When I heard it, I was like, I know this song. But being a musician, balance is the absolutely wrong word here. But how do you navigate your creative drive and your creative world and what music is to you with the realities of living in your body? Like how how does that happen for you?
Not very easily. I will say, you know that song, It's I'm like, thank you, Tim Burton. That was a great event. You know that song that they used that is from twenty eleven. I've only recorded one album and it's over ten years, almost twelve years ago now, and people are always like, where's your new music? Why do I have new music. I'm like, if I mentioned that I have this extremely severe, painful chronic illness, the writing of songs I find very challenging. It's very very cathartic. It's great to have that skill set as a chronically ill person because it is, you know, a way of like any art. You know, it's any it's a way of processing stuff that you sort of can't process intellectually, but the process of getting it recorded and doing all of the stuff that comes with being a musician. You know, I can't go on tour, I can't go into the studio. I can't do you know, I don't have a record label because they don't sign non touring artists. I mean, it's not the most disability friendly the recording industry. And so that's all really really challenging, especially because this is just happening to me this week, where you know, I'm speaking all these people in the industry and they're like, you know, where's your new music? Why are you doing this? Blah blah blah. And I'm trying to explain to them while I've got these medical problems. They're like, well what They're like, I mean, I saw you recently. You know you look fine to me, and I'm like, okay, And this is where not having like a proper I do have a lot of diagnoses. But you know, if I turn around to you know, Jack from you know, x y Z record label and say I've got EMYCFS, does that mean anything to Jack? No? No, no, it does not. If I say I've crps, does that mean anything to you know Rose?
No?
Jack and Rose, I don't know. It's just cheff them. But you know, it's just yet another one of the problems when you have one of these illnesses that is so poorly understood and that again has no physical you know, Jack would not say that to me again if I had a big thing on my face. And so it just makes it very difficult to kind of move forward in the industry because you cannot get the support that you need from you know, anyone, and so it's so it's really challenging. I'm doing my best. I'm actually working on some new music right now, and I'm super excited about that. It's like the first time I've had to work on music where I didn't have stuff for the book also going on or book promotion and things like that that took up so much of my time and energy for like a decade, and now that's you know, mostly over, and so it really is the first time that I've kind of had space where I, you know, my I only have like a couple hours a day that I'm functional, and so that means that now I can spend those couple of hours making music, and so I'm excited about that. But I'm also like trying to keep my expectations myself quite quite low, just because I have a tendency to really overpromise to myself what I can do in in a given period of time. So this year, I'm just trying to get one new song record.
It's so it's interesting while you're talking about like the difficulties of naviticating a disability unfriendly industry, it's like just a series of translation errors. So much of what you've shared is it's hard to get doctors to understand what it's like to be me. It's hard to get friends and family to understand what it's like to be me. It's hard to get music professionals to understand what it's like to be me. And the effort involved in trying to translate the invisible to the visible.
It's a lot, and there's no Even though you know I've written a book about it, I've had to write a million letters to friends or to new people that I'm working with to try to explain myself. Sort of never gets easier. It just always feels like you're sort of starting from scratch to be like, okay, let me like we said at the beginning, sort of like turn myself inside out for you so that you can see. You know, we haven't done this for the people that are listening right now. So what do I have? Have MACFS, which is chronic fatigue syndrome, which makes you feel like you've got the flu constantly. Your muscles ache and burn constantly. It's very similar to when you've gotten your booster and it makes you quite sick. Like when it doesn't make you sick, that's not when it makes you quite sick when you get your COVID booster. That's what like low level fatigue syndrome is like all the time. I've got that. I've got an iliostomy, which is like an external poop bag for you know, my colon is disconnected from the rest of my body. I've got complex regional pain syndrome, which is the most painful pain syndrome that exists in my vagina and my pelvis and my abdomen, my spine, and those are like the those are like the top line things. But that's there's like a million million other things, and so it's very difficult to be like, hey, Jack, let me tell you about most painful pain syndrome that's in my vagina, that's in my bladder, that's in the left side, you know, my abdomen. You know, that's not a conversation you can just sort of like have and it's and it's okay that that person is going to feel comfortable and and want to like keep working with you in a professional capacity. And so it's just it's really it's really really challenging. Whereas if I did have a like let's say, you know, I had you know, MS or something like that, I could just say I got MS the end, you know, like then there there's enough understanding around that problem where it's like, okay, as a serious disease, I don't need to hear more about it. She's telling me that it's a problem. I can take that at face value, and it's going to take her a lot longer when you don't have that sort of of or missing the protection that comes with a diagnosis and a space of understanding that is just kind of absent for most of these problems.
There's no cultural shorthands. Yeah, yeah, that helps people like, oh yeah, I got that. I watched the PSA as. I understand what that.
Is exactly, and that's for me. I are just that's like the thing that I feel like I long for the most is just that because I understand the flip side of that is like some people, you know, hate their diagnosis and hate being reduced to just this word or this diagnosis or whatever, and I totally understand that. But it's just also true that the flip to flip it back around, having none is really really, really difficult because people just can't understand you and they don't understand what you're saying to them without having that sort of cultural understanding come in, without you having to educate every single new person that you meet.
I was reading reviews of your book getting Ready for Our Time here Together, and so many book reviews are like, you know, it's ultimately hopeful this story, like you know, even though it does not end with you being all better, because that's not how most stories end up. But you know, as you're talking about the realities of endless goodbyes to things that you want for yourself, to dreams that can't happen, knowing what you know, living in your body and living what you live, does hope factor into this at all for you? What would hope look like for you?
Oh? Yeah, I am like pathologically optimistic out of my life, like against all evidence against you know, there is not a whole lot of data in my life that would you know, go into the truth machine and come out with the ticker tape on the other side and be like you should you know, things are looking up, like It's not not what the truth machine would tell me. But this is the one thing that I actually feel grateful for that part of it is my own you know, I do do a lot to try to keep my spirits up, like I because just from my perspective, it's so much worse when I don't do that, So it's just for me. It's not to be like palatable for other people. It's just my life is better when I try to like really focus on the things that give me joy and that give me a sense of connection. But that's a little bit different from all I was going to say about feeling lucky, is that I think part of that I do do a lot to cultivate it actively. But I think also one of the things that I have that I that is just the luck of the draw is that I think my own disposition just has that like sort of it's I always describe it as like a buoy. It's like very difficult to keep up underwater, and that I feel acutely aware that I'm not doing that. That that's like my brain chemistry is just like really doing me a favor, and so I feel very grateful for that. But I also do do quite a lot to try to, you know, keep myself feeling I don't know if hope is the right word, because I don't feel that hopeful anymore in terms of like the way that I used to feel like. I do feel hopeful in a general sense that things are changing for people like me, that there's more funding, that the sort of the cultural conversation is shifting. I see the Washington Post writing about macfs every month or so, and I'm like, holy shit, that had never happened before. This is entirely down to, you know, the incredible activism of all these people in this space. So that gives me a sort of abstract sense hope. But my own relationship to my own life now I've almost sort of like let go of like what we were talking about before. If like, surely by the time I'm fifty two that I will feel better and that things will be better for me, That for me over time became just deeply unrealistic and sort of like having to lie to myself over and over again, and that started to feel bad. And so now my orientation to my own life is much more about like, Okay, well, this is what it is, this is what it's going to be. Like how do I look at that and be like, listen, I hope it gets better, but let's just assume that it's not going to. How can I take these like very narrow parameters and try to make the best of this pretty fucking terrible situation. How do I try to make the best of that, because for me, it's like, well, what's the alternative. It's like it's just I've also gone the opposite land, and like, fuck, all of this just gonna like not try at all. And I feel worse when I don't try to garden a little bit every day, even though gardening for me is difficult physically, but I really feel better in my soul. So I try to just instead of being like I'm going to be the best gardener in the world, No, I'm just going to have this little teeny garden that I take care of, and that makes me feel a little bit better. I can't go out and do a lot of fun things with my friends, but I can make sure that I've got friends that understand me that will come over to me, but not automatically. I need to tell them that I need them to come to me for them to be proactive to understand me. So there's so many little things of being like, Okay, this is what it is. How do I try to be creative in this narrow space to try to make it not as good as it can be, but just a little bit better. That's like, to me, like the healthiest way for me to approach every day and sometimes I completely fail, and I know I have a bad day, but I mean it's just you. You drag in the next day. And that, to me, has has been very freeing instead of being like, I'm on this health quest to get better and I'm just gonna be the best health quester in the world and just try so so so hard, you know, like that that that I have that mentality for a really really long time and I finally just had to, you know, like and it's okay. I feel better having like all of that. I'm like, you know what, I leave this to the researchers and all those people over there that have money, that have they're not sick, they can you know, generate hope for me and people like me and I all I need to do is or all I really can do is just try to make life in these four walls a little bit better every day. And when I do that, then I feel like not all is lost, but that there's there's some sense of fulfillment and contentment.
I love a complex version of hope, right because hope because hope is complicated and complex and it's not transactional, right like that vending machine of I hope it gets better, and then you know you're looking for looking for a very specific outcome. So yeah, I feel like you're you've described an inhabitable hope and I appreciate that.
And thank you.
So we are going to link to your book and to the Wolf Larsen page so people can find more of your music and more of your writing. Is there anything else you would like people to know before we close up today?
You know, if you are a person that is like me that has an invisible illness, or if you're a person that does not have an invisible illness, I want to encourage the people that are sick. I want you to know that that you are valid, that I see you, and that I believe you, and that there's, you know, an ever growing community of people to feel a part of that you're not alone in all of this, and that even though it feels so horrible so much of the time, that you are right and no matter how many times that you're told that you're wrong, you're on, you're on, you're wrong, you are right And I know that, and you know a lot of other people in this community know that as well, and so for that's for the sick person, and for the no sick person, I really hope that you reach out to a sick person in your life and let them know that you believe them and that you see them, because a lot I know there's so many people in my life that absolutely feel that way, but I if I don't hear from them for a really long time, you know this, this feeling that you're alone starts to creep in again. And so I would just encourage anybody to take this as a little spark to text your friends struggling to let them know that you're thinking about them.
Wonderful, Thank you so much for being here. Thank you all right, everybody, we will be back with your questions to carry with you right after this break. Each week I leave you with some questions to carry with you until we meet again. You know, it really struck me in my conversation with Sarah, well, for me personally, so many connections lit up in my brain over and over and over. It got me so fired up about all the ways that we ignore and dismiss what people tell us about their actual lives. Right, this isn't something that just belongs to chronic illness or just belongs to grief related to death. There are so many ways, medically, culturally, interpersonally, so many ways we miss each other on purpose and accidentally. It made me want to talk about that stuff more, the ways that we don't really hear each other. It also made me want to look for the places where maybe I'm not listening to other people as well as I could. I do this stuff for a living, but I'm still always practicing. So what about you? Did anything stick with you or light something up for you as you listen today? Everybody's going to take something different from this episode, but I do hope you found something to hold on to. If you want to tell me how today's show felt for you, or you have thoughts on what we covered, let me know. Tag at Refuge and Grief on all the social platforms so I can hear how this conversation affected you. Follow the show at It's Okay Pod on TikTok and Refuge and Grief everywhere else to see video clips from the conversation, and use the hashtag It's Okay pod on all platforms, so not only I can find you, but others can too. None of us are entirely okay, and it's time we start talking about that together. Yeah, it's okay that You're not okay. You're in good company. That's it for this week. Everybody, remember to subscribe to the show and leave a review. Your reviews help make this show easier to find, which furthers our mission of getting more people to have interesting conversations about difficult things. The other benefit of leaving a review. Your reviews are really special to me and I read every single one of them. Want more on these topics. Look, grief is everywhere. As my dad says, daily life is full of everyday grief that we don't call grief. Learning how to talk about all of that and learning how to listen for it are important skills for everybody. Get help to have those conversations with trainings, professional resources, and my best selling book, It's Okay that You're Not Okay, plus the guided journal for Grief at Megandivine dot Co. It's Okay that You're Not Okay at The podcast is written and produced by me Megan Divine. Executive producer is Amy Brown, co produced by Elizabeth Fozzio. Logistical and social media support from Micah, Post production and editing by the ever Patient Houston. Tilly Music provided by Wavecrash and background noise today provided by the endless drone of background helicopters. They both kind of say to do that, you'll need to turn off airplane mode.
They do both say that.
They do both say, oh my god, Siri stopping.
They both ask you to.
You know, what's really weird about that is like that shouldn't happen because it's in airplane mode. But it's like it's doing it. It's doing it anyway.
Machines are taking over.
The Machines are doing this thing that they go away, Siri, Siri clothes you were she harsh my vibe