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Interview with Sarah Marie Ramey

Interview with Sarah Marie Ramey

The following is our transcription of our podcast interview with Sarah Marie Ramey, author of ‘The Lady’s Handbook to her Mysterious Illness’, a book that we are pretty much obsessed with and highly recommend!

Cassie:  Welcome to “The Real Life Show, Living with a Chronic Illness.” We are your hosts, Cassie and Chelsea. 

I’m Cassie, a single mom living with a chronic illness who is extremely passionate about living a full and happy life.

Chelsea:  And I’m Chelsea. A mindset coach that has a passion for helping people learn to put themselves first and be the best version of themselves each and every day.

Cassie:  We came together to create Spoonie’s Unite, an uplifting community that offers resources guidance, and support so you can live your best life while giving you the space to be yourself, be heard, and feel understood. We hope that by providing education from experts, we help spoonies and their loved ones thrive.

Chelsea:  This show is not only for those who live with a chronic illness, but their friends, family, spouses, and just anyone else existing on the Earth. Our goal is to normalizing having a chronic illness by sharing the real stories with real people and show the world how relatable those everyday struggles can be. There’s a little something in here for everyone.

Cassie:   And, of course, thank you to our patrons for your continued support making this possible. If you love our show and want to get some extra goodies, go to patreon.com/therealspooniesunite. Enjoy the show!

Hi, everybody and welcome to “The Real Life Show: Living with a Chronic Illness.” Today, we have a sweet freaking episode ready for you, and we’re so excited about it. We are interviewing Sarah Marie Ramey, who is also known as “Wolf Larson.” Sarah is a writer and musician, a.k.a. “Wolf Larson.” You can look her up on Spotify and anywhere else that music is, and it’s great music. And, Sarah lives in Washington D.C. She is a graduate of Beaudoin College in 2003, received an MFA in Creative Nonfiction Writing from Columbia University, and worked for President Obama in his 2008 campaign. She is also the recipient of a 2018 Beaudoin Grant. Her music has been featured on NPR, and her debut book, “The Lady’s Handbook for Her Mysterious Illness,” has just been published by Doubleday in March of this year, 2020. The book is a memoir and a manifesto for those struggling with invisible, misunderstood, and dismissed illnesses. And, for the last 17 years, Sarah herself has been living with her own serious, painful, and often disabling mysterious illness. Her mission is to make the invisible visible. And to let WoMI’s, women with mysterious illnesses, know that they are valid, they are worthy, and they are not alone. 

Chelsea:  Cassie and I have both read Sarah’s book, and to say that we love it is kind of an understatement. We’re both massively obsessed with this book. We think it is an incredibly important read for pretty much everyone on the planet, and we talk about that with Sarah in this episode. But, really, this book and Sarah’s experience is pretty amazing. The amount of work love and care that went into all the research that Sarah did, sharing her own story, and just giving validation and hope to anyone living with a mysterious, invisible, chronic illness, it’s a very moving story that we highly recommend that you read and check out. And, to help you do that, we are doing a giveaway with this episode. So, this episode comes out on July 15th, 2020. And so, from then until August 1st, 2020, you can take a screenshot of you listening to the episode. You can share it on Facebook or Instagram, in your feed, or your stories. Tag us, @therealspooniesunite, and you will get entered into the drawing to get a copy of Sarah’s book. If you’re extra excited about this book, about as excited about it as we are, and you want extra chances to win, you can earn additional chances into the drawing by taking screenshots of our other episodes, sharing those on social media, tagging us again. You can also leave a review for our podcast. Just make sure that when you type the review, before you press send, you take that screenshot, and you send that to us. And our email is hello@therealspooniesunite.com. Send us that screenshot, because if you send it, then we don’t get to see the review for a really long time. We want to make sure that you get to credit for that extra additional drawing entry. So, we are so excited about this episode. We are so excited about Sarah’s book. And, we hope that you all enjoy it. 

Cassie:  And you can head on over to our Instagram for the full details for our giveaway too.

[Music] 

Chelsea:  Hello, everyone and welcome to today’s episode of “The Real Life Show, Living with a Chronic Illness.” Cassie and I are super excited about our guest today. We have Sarah Ramey with us. She is the author of “The Lady’s Handbook for Her Mysterious Illness,” and it is one of Cassie and I’s absolute favorite books of all time. We both love it, and we are so excited to have Sarah with us. So, thank you for taking time to talk to us today, Sarah.

Sarah:   Oh, my God, that’s such a nice introduction. Thank you very much for having me. 

Chelsea:  Awesome. Well, Sarah, you have quite the story and you go through it in your book. I know, as I was reading it, there was lots of moments where I would hear about something that happened, and I’d be like, “Oh, God! That’s awful.” And then, less than 100 pages later, I was again going, “Oh, my God. It’s happening again!” Or something else is happening. And, just can you give our listeners a little bit about what your story is and kind of what’s brought you to where you are today.

Sarah:  Yeah. So, it is true that the nature of my story is it’s like one trapdoor opens, and then another trapdoor opens underneath that, and then another one after that. But I’ve found that that’s not unusual for people like me. And so, the book is about my story but then also about this larger group of women that I found that are just like me. That have, you know, “mystery illnesses.” So, chronic fatigue syndrome, fibromyalgia, Ehlers-Danlos postural orthostatic tachycardia autoimmune diseases. There’s a family of illnesses that if you are familiar with it, if you’re in that community already, you already know this like a long laundry list of syndrome names. And so, the story, my story is it is a little complicated. Basically, I was. So, I’m 39 now, and I was 22 at the time I was a senior in college, and I was basically totally normal. I mean, I had some minor health issues. But really, really minor. And I was super active. I was like the singer in a band and the head of an acapella group, and directing the musical, and just like really, I mean, really active. 

But I had a UTI that just was very persistent and wouldn’t go away. So, I finally had to go to a urologist who wanted to perform a procedure that’s called a urethral dilation, which is supposed to be not such a big deal. Not, he said, you know, “Maybe it’s a little bit painful, but, you know, nothing serious. You’ll be fine. We’ll do it right here in the office.” And so, I believed him that that was what was going to happen. And, I, you know, saddle up for this procedure. And, it is not painless. It is the single most painful thing that I’ve, or one of the most painful things I’ve ever experienced. And, it’s basically — I won’t, we won’t go into the details. But it’s extremely painful. I leave the office. I’m in a tremendous amount of pain, and within 12 hours, I had woken up and I have a really high fever, and I’d become septic. And so, I had to go be hospitalized and–my parents are both doctors, and so, they understood kind of the broad strokes what’s going on. So, basically, one day I’ve just got this UTI. The next day I’m in the hospital. I have sepsis which you know is a life-threatening problem. And I have tremendous pelvic pain, and I just feel horrible. 

But, we all just thought, well this is a terrible thing that’s happened. No one knows what could have happened here, what could have transpired because the doctor was very adamant that it was a totally normal procedure, and he didn’t understand why this was happening. And so, we all just thought, “Sure. It’ll go away. It’ll bounce back. You’re a young person, like anybody, you know.” Something bad happens to you, assume that you’re just going to get better after you go to the doctor. And so, but they sent me back to college with an IV line of antibiotics for a month. And this is important I think for later. And so, I go back to college, and I have tremendous pelvic pain that I did not have before. I’m sleeping constantly. I’m sleeping like 18 hours a day. I feel like I have the flu all the time. My muscles are aching like all over it. And so, and I am like clearly not getting better. I’m kind of getting worse. 

Sort of the longitude of it is that really over the next year, instead of going to spring break with my friends in senior year I had to go home and see like 10 more doctors. And instead of going to get a job that summer, I just spent the entire summer seeing doctors. Basically, everyone, and they’re all the top-shelf doctors because my parents are doctors. And so, everyone is trying to figure out what has happened to this young woman. I’m like sick all the time, horrible pelvic pain, colon stopped working, and no one can figure it out. All the tests are run. Everything comes back negative, negative, negative. And, eventually, there’s this one neurologist who really summed up what would be the conclusion of basically every doctor to come after that which is this one neurologist who did this horrific test that was negative. And at the end of it, he sits down with me and my parents in the same office and looking at my parents and not me. He looks over his glasses and he says, “Well, I think that what we can safely conclude here is that like so many young women her age her problem is psychological.” 

Chelsea:  And that made me so mad when I read it. 

Cassie:  I know!

Chelsea:  I got like very upset.

Sarah:  Yes. Really what the book is about is that that experience should be rare, and that is profoundly–it’s not common. It is like everyone I know, has had an experience like that in the medical system. Especially, if you have–certainly, this family of illnesses that the “mystery illnesses” are autoimmune disease. But, so many women that don’t even fall in this category have read this or read a piece by me and are like, “Yeah. I have that exact same experience,” or talk to me. And it’s just an astounding number of people who all–I have to say, it reminds–the thing it reminds me of the most is the “Me Too” movement. It’s this thing that should be rare, extremely rare, but actually, it’s just a huge number of people put their hand up when you actually bring it into the light. And so, yeah. 

And so, in terms of the rest of my story, it’s basically just like a long series of tragedies of just trying to figure out what was wrong. I became extremely, horrifically bedridden at multiple times. The pain situation got much worse. I was eventually diagnosed with complex regional pain syndrome, extremely painful pain syndrome, and then chronic fatigue syndrome eventually, and a whole bunch of other syndromes. And POTS and MCAS, and a bunch of other things. And do you want me to tell the very end? Like the thing that they found at the very end, or no? I mean–

Chelsea:  If you want to. I know, when I read that part, I was just like, I actually I was happy for you that they found a reason. But I was also really angry for you because there was so many times where you’d ask for that to be done, and they never did.

Sarah:   Right.

Cassie:  Yeah. I think it’s important to share, actually, because like with a decade of having to, in a sense, defend your sanity in a medical room. And then, the whole time, there really was something there. For our listeners, I think that’s important for advocating for oneself out there in the world.

Sarah:  Yes. It’s a little complicated because I don’t just have one problem. Like I’ve got the pelvic pain, and the colon doesn’t work, and the horrible chronic fatigue problems, etc. Which in the book, we really go into some of the science of chronic fatigue, and how all that can be related. And so, I won’t talk about that, but in terms of the pelvic pain, specifically, I went to I mean over a 150 doctors in the course of this whole time. And I’m–140 of them either just sent me away, or told me that I had a psychosomatic problem, or that I needed to see a therapist, or that I was being a nervous nelly, or that I was oversensitive, or that I was a malinger, or that I was an attention-seeker. I mean, on and on and on. I shouldn’t laugh. I mean it’s horrible. Are you allowed to swear on this podcast?? 

Cassie:  Literally, all I wanted to say is like it’s like fucking enrages me. 

Sarah:  Yes! Yeah. It is fucking enraging. It is so–like I joke a lot, and I laugh a lot, but it is largely because it has just been so bad. And so, to think back on it is a little bit difficult. But, anyway. So, all those doctors, and over and over and over again, from the very beginning, I asked them if they would really explore and look in the original area where it had this like mishap with this urologist. That was so obvious that like there was a before and after with this guy. And they were like, “Well, but you had problems before that. You had a UTI.” I’m like, “Yeah. UTI is one thing. This is completely different.” And they did do at the very, very beginning, they did–it’s called a transvaginal sonogram. They put this, like device inside of you. And it showed a little abnormality on the left side of the genitals, which is where I was describing all this pain. And over and over again, like when that first came up, I have all these emails for me to doctors, and to other people saying like, “Hey, this is a thing.” Like, “What’s this?” Like, “Can we look at this? Can we–? That’s got to be it, right?” And everybody’s like, “Oh, you silly.” Like, “That’s nothing. That’s probably–it’s probably nothing, you know.” It’s the thing that they say to chronically ill patients. Like, “Think horses, not zebras.” Like that’s what we like it’s the most likely thing is probably not like an outlier event.

Anyway, long story short. A short 15 years later, I finally–

Cassie:  Fifteen years…

Sarah:  Yeah. I mean, unreal. Like, I can’t have sex. I couldn’t–I have one pair of pants that I can wear. Like, just can’t have kids. Like, I mean, real, very real consequences in my life. And, 15 years later, I finally–I got a doctor to send me to the like, the appropriate place I had to go to. Like a special pelvic pain hospital to be evaluated for what’s called a “neuroma,” which is a growth that grows on a nerve or a set of nerves because of–usually, it’s because of some kind of trauma to the nerve. And so, a very common trauma to the nerves is a surgical trauma. And when I’m reading about this, because the guy that emailed me about it, it’s like, it’s caused by trauma. It causes like horrific pain if left untreated. The most common thing that it will become is this thing called, “complex regional pain syndrome,” which is what I have, and had been telling everyone the entire time.

Anyway, I go up to see this doctor. He put my anesthesia and does the procedure, and I come out of anesthesia. And, at this point, I’ve had like, I mean, dozens of procedures. And so, I just immediately was like, “It’s nothing, right? Like, you didn’t find anything. I get it. It’s fine.” And he’s like, “Oh, no. We definitely found it.” He was like, “It’s so big, I can feel it with my hand.”  I was like, “So, they found it.” Actually, it’s not technically a neuroma. It’s a big, massive scar tissue. It functions in exactly the same way as a neuroma. And it’s a big mass of scar tissue entrapping like five different nerves in the pelvic floor that had damaged all the nerves, the blood vessels, the lymph ducts, and had just been sitting there the entire time, and was obviously the cause of all the pain. And what they think is that you know the original urologist, he missed the urethra. He made what’s called a “false track.” He went into the left side of the vagina with the instrument, and he hit the nerves, and that caused a bunch of scar tissue to develop and basically like wrap around and compress the nerves, which is like if that happens elsewhere in your body that hurts. But, what happens in your vagina and the pelvic floor, it’s just compounded because it’s such a sensitive area. And so, anyways, long story short, that’s what was wrong. Like, that’s what was causing the horrific, horrific pain. And also for my colon to stop functioning is that that was the same thing it caused, what’s called a “neurogenic bowel,” which is because of nerve trauma, etc. 

And so, 15 years of being told that I was overreacting, that I was being an irritant, that I was an annoying patient. I mean, just did only to find that actually, I’d been like horribly injured and disfigured by this original doctor 15 years ago. So, that’s just one example of the consequences of not believing patients when they tell you that they’re horribly sick, and just waving it away as if you know better. And that’s a lot of what the book is about. 

Cassie:  Yeah.

Chelsea:  One thing I found really frustrating listening to your story was, with that in particular, it’s like you think that along the line, if you’ve been in that much pain with no obvious reason, I use like air quotes, that the “western medical community” could find, you’d think that someone before a 15-year time period passed, would’ve been like, “Well, let’s just look and see what’s it going to hurt to cross something off the list, just in case.” 

Sarah:  Yeah.

Chelsea:  And, the fact that it took you 15 years to find someone that would do that, just–

Sarah:  Yeah. And, to be clear, like, we did–they did do the right thing. They looked for it in the beginning. But then, when they found it, they’re like, “Well, it’s probably not that.” And, instead of the many times after that when I was like, “Well–but, okay. But, let’s revisit that. What if it is like–can we look again?” They just, as this in the book, they said to me over and over again, “So, normally, you just do that outpatient in the office, and it’s–” “But, in my case, the whole point is that I can’t do that outpatient in the office. It’s too painful to just like put the device inside of me. So, I had to have it done under anesthesia.” And so, I was like, “Can you just book an OR, and let’s just do this under anesthesia?” And they were like, “That is asking way too much of this, of the system. We’d have to book an OR. That’s way outside of protocol. We don’t even know the codes would be for that. We’re not doing it. That would be an indulgence, like, on a whim, that you just think that that’s what’s wrong with you. And there’s no evidence for that.” And I’m like, “But there is evidence. The first test showed that there’s something wrong. I’m still in all this pain. Why–it’s the opposite of an indulgence.” Like, I can understand if they think it’s something else. Like if they were trying to figure out, like if they were hot on the trail of some other more plausible idea, but they weren’t. They were out of ideas and were like, “We really don’t know what it is.” Like, “I really think that you just need to go back to your therapist and work on stress management.” 

Cassie:  Ugh! 

Sarah:  Yeah.

Cassie:  It’s just so like enraging. And when I was reading your book, as I said, just before we started recording. There were so many spots that I was like, “Oh, my gosh. This is my story, too.” And, like you said, because so many of us, this is the story. And I, in some ways, I guess was fortunate for my own health journey because I watched it all happen with my mother when she was sick, and that like no one believed her, or like listened to her. And I did also–she was a doctor. She was an acupuncturist. And, she got her doctorate at Oxford University in England. So, she was like incredibly intelligent. And so, to watch the western medical system break down her courage, her standing up for herself really made me make sure that I didn’t waver. 

And so, there were moments reading your book that I just wanted to like hit these doctors. And, because it took years but for me also before I had a doctor listen. And, I’ll never forget being in my OB-GYN’s office and telling him all these symptoms that I was having. He put his hand on my knee, and he said, “It sounds like you have a real problem but it’s not–to me, it doesn’t sound reproductive. To me, it sounds digestive. I’m going to make a call. You need to see some a gastroenterologist, a specialist.” But that moment of him putting his hand on my knee, and he was male, and so to me, I already was kind of like guard up, quite frankly. Because he was male, I definitely had the perspective of like, “How can a dude be an OB- GYN?” Like, we’ll never get it. You know? But he, in that moment, believed me. And that was the first time that I really had seen that from my mother’s 6-year journey, and my like 3-year journey, up to that point.  So, it wasn’t even as long as what you went through. And so, with your book, when I just kept reading this happening, like over and over and over again to you, I was just like the string of probability that that many people would try to dismiss you was just crazy. And, it’s crazy, no pun intended. But, so many people that’s what’s going on. And, especially in the book, you mentioned someone giving you the diagnosis of fibromyalgia. And at the time, it was like, “Oh, no, no, no. Don’t tell other doctors that you have fibromyalgia because they’re going to, right away, see you as crazy.” That still goes on today. For a lot of those illnesses, like you said, the chronic fatigue syndrome, Lyme disease, all the things. 

Sarah:   Yeah. POTS, postural orthostatic tachycardia syndrome. All of it is this whole family Ehlers-Danlos isn’t that–that one is in the news a lot recently. And, it’s the same thing. And it’s what’s interesting is that I really do. It’s an endometriosis, polycystic ovarian syndrome, and very common to have all the same reaction from the medical system. And what is so fascinating to me is that they are like when you start to dig into the literature, it is incredibly common. They’re clearly related to each other in terms of the actual like pathophysiology. Like, they are clearly part of the same family of neuroendocrine-immune problems, you know. In the same way that heart disease, and diabetes, and obesity are frequently comorbid with one another. It’s the same thing. Over here, it’s just like the neural endocrine immune branch of the chronic illness tree. But the difference is that, the one branch, the heart disease branch, we take very seriously. And the neuroendocrine-immune branch, we just pretend–because a lot of it is invisible, we just pretend–doctors tend to pretend that it’s completely made up and it’s just, it’s there. And I really do think that that has to do with that they really do. These problems really do affect way more women than they do men.  

I think that if their ratios were inverted, if it was like 85% of fibromyalgia patients were male, you would 100% see this taken seriously right at the beginning when we first started seeing these problems 30 years ago. But because when it’s women, there is I mean, it should not be a surprise to anybody there is an incredibly long, robust tradition of disbelieving women when you don’t have hard proof to say like, “Here’s what I’m saying is true.” It is incredibly common to tell women that actually they’re just–

Cassie:  Hysterical.

Sarah:  Yeah. 

Cassie:  The hysteria, you know.

Sarah:  Yeah. I mean, it’s not like the idea that we’re so far away from like our long history 6,000 years of sexism, it’s ridiculous. I’ve had so many people say to me, “Oh, do you really think that’s still a problem?” I’m like, “What? Yes!” I mean, “What do you think?” 

Cassie:  Oh, yeah. We’re seeing it in the news every day. And, in fact, I just saw like a little meme thing today that was talking about like coronavirus right now of, “Oh, men, don’t like the government telling them what they have to do with their bodies.” And then, it was like women being like, “Oh! First time, guys?” You know? 

Sarah:  Like, what are you being asked to do? Stay inside, like versus like everything that women are asked to do. I mean it’s just crazy.

Chelsea:  I know when you mentioned in the book the stats that like 80 to 70% of chronic of mysterious illness diagnosis end up being in females versus males, I was like, “It’s that big of a difference?” And I guess, like kind of what I thought about it most of the people that I know that have chronic illnesses are female. But, I also kind of wondered if that was just like the circles that I was running in, being a female myself, I was just attracting other females. But just having that statistic out there, I was like, “Oh, that’s obviously a problem. There’s something going on.” And the way that you broke the research down, and like how women weren’t included in all medical testing until like 1991, I was like–

Cassie:   Yeah, clinical trials?

Chelsea:  Yes.

Cassie:  Like, blew my mind. I, literally, after I read that, it was like the next day and I was driving around town with my son, and he’s going to be 12 this summer. And I was like, “Shannon, can I tell you something about like women these days?” And I, like talked all about that. And, I was like that’s like only 30 years you know that the female body is being like tested on–

Chelsea:  Taken seriously. 

Cassie:  Yeah. And it was just that was like, that was mind-blowing.

Sarah:  They tested on women some before that. But it wasn’t until 1991 that they–it was required that you had to really attempt to achieve some kind of validation, but it’s still really bad in that way. Like, it’s still–there’s a major disparity. Actually, this good pain doctor right now, she prescribed a medication. It did not go well for me. And, normally, when I react poorly to a medication, my doctors who are usually male, say like–they get irritated with me like, “Oh, of course. You’re so ‘sensitive’ to it.” They get really annoyed with me. And then, I feel like ashamed or annoyed with them, and it’s just this horrible situation.

And so, I went back to this doctor, and I was so ready for that dynamic to play out. And I was like, “Yeah,” I was almost apologetic. I was like, “It went really badly, and I don’t know. Maybe it was something that I did.” And like, she was like, “Hold on. First of all, do not apologize to me.” She’s like, “You’re the one that had to deal with the fallout of that medication that I prescribed to you that didn’t go well.” She’s like, “Second of all, don’t you know that most medications are tested on white middle-aged men?” She’s like, “So, if it isn’t working for you, the higher probability is not that you’re an over-sensitive hypochondriac. It’s that you just have a different body, and we need to either try different titrations of the medication. Or maybe that’s just not the medication for you, and that’s fine.” And I was like, “Yeah.”

Cassie:  What a difference I’m sure that made to be like validated and heard.

Sarah:  Yeah, and to not–because like, I talked about this a little bit in the book. I have learned to speak up for myself better at physicians, but I will say that it’s if it’s a doctor that I need to keep seeing, like and I really need their help, it is a lot harder to push back against somebody. And so, you want to be as well-liked by that person as possible because you need them. If it’s somebody that I feel that I’m not going to need to work with them in the future, or that they can take it if I push back, then, I’m a lot more comfortable with that now. But, you really are in this like really difficult power dynamic where they have all the power and you really need them and so it’s very difficult to talk back, essentially. Because it just, frequently, will boomerang back on you especially if you’re really sick, and like in just such a weak vulnerable place. 

That is why it’s even more incumbent on doctors to take as much responsibility and to be able to be as self-reflective as possible regularly because they have so much power. And, that means, they have to have an even more responsibility to make sure that they’re you know wielding that properly. 

Cassie:  Absolutely. It’s really interesting that it makes me think of–we did an interview with a doctor named Dr. Selvi Vasudevan. And, she is an IB. She has IBD. She has Crohn’s disease, and she’s also an MD. And, she got her diagnosis when she was in college when she was young. And so, she really talked about the gift that that was for her because she was experiencing being the patient and the doctor. And then, other doctors that she was going through her clinicals with and such, who like had a hard time listening to the patients or believing. And then, she could offer that patient perspective to them. And I almost wanted to cry during that episode, because I was like, that is a gift with a ripple effect. Because like you said, other doctors who maybe haven’t experienced what’s going on, and you have to make yourself amiable in order to remain being heard because they have a hard time being empathetic or compassionate. It is such a difficult dynamic. 

And, one can understand why especially like you said someone that you need to keep working with that you have to try to maintain a good relationship. And then, on the flip side, it’s like I had a doctor who was like horrible bedside manner and really aggressive, and I found myself completely shut down and resistant to like anything that she was saying, and I didn’t trust her. I didn’t believe her. And I knew that that wasn’t good. And this was in the very beginning of my diagnosis. She actually is the one who gave me my diagnosis. But I found myself right away distrusting, so I found another GI. Where I was living, there was only like two in the city. That I was like, “I’m not going to listen to this one.” And so, I need to try the other one. And I was very pushy about it. Even the receptionist of like the new doctor was like, “Well, they’re not seeing any new patients.” And I was like, “I don’t care. You need to get me in. Like, find a way to get me in. Like, PA. I don’t care. I’m getting in.” And so, that’s where I say, it’s like I watch so much of my mother’s journey and her being defeated by the system that I’ve worked really hard to not let that happen. And, sometimes I’m almost maybe even like overly aggressive. But then, there’s times that like Chelsea came to an appointment with me, and I was in there essentially like begging for help, begging for something. 

Chelsea:  Yeah. You didn’t seem aggressive to that appointment that I went to at all. 

Cassie:  No.

Chelsea:  You definitely were like, “What can we do?”

Cassie:  Yeah. And that was one of the times of being really sick. Like you said, Sarah, when you go in and you’re just incredibly ill, and you are just searching for help from these supposed experts. I think Chelsea was going to ask there. You did so much research going into your book. I mean that was something that I wasn’t expecting going into it, and I loved it! And I was fascinated in horrible ways and in wonderful ways about all of the research and the facts that you show. And, how–that must have been hard firstly to find a lot of that information because there is so little information still about chronic illness. Particularly, mysterious illnesses, like you said. And so, can you walk us through that process a little bit, and how easy or hard was it to find sources, and how much of the connecting did you have to do yourself? That’s a lot of questions. 

Sarah: That’s okay!

Cassie:  All of it. 

Sarah:  Yeah. So, basically, the research part of it was definitely the most difficult part of my work. Part of it is has always been sort of the easier part for me to write. And the research–because I had sort of, actually, a different concept for the book when I first started. I was really just going to write about gut health because in the very beginning, I learned about that. I said, “This is so fascinating.” And there’s not very much as this is way back. This is like in 2006. Like, there’s like nothing about this in popular literature. And so, I’ll write a book about gut health, and it was not setting out to give sort of a theory of everything. For all of these different problems was really just to talk about how gut health might be contributing to some of these problems. That’s actually when I sold the book. It was like I sold the book, and it was basically a book about gut health and about people like me. And, that was in 2010, and the book was due in 2011, which tells you something about how hard it was for me to write the book. It was I think, they told me it was like, they’ve never had a book turned in later than my book. 

Cassie:  It was well worth the wait. 

Sarah:  Thank you. So, I mean, part of that was the research was very difficult, but part of it I was just really sick throughout all of it and got into some–[. I really just had to stop working on it for a couple of years. So, I started with just looking at the microbiome. But then, it just became so clear that I wasn’t just talking about the microbiome. That there were–and I wasn’t just talking about chronic fatigue syndrome and fibromyalgia. I was trying to figure out, “Well, how is Lyme related to this? How is Epstein-Barr related to this? How is mold illness…” Like, what? How can you put all of these things together into a cohesive theory of everything? I’m somebody that’s a little skeptical of trying to come up with a theory of everything. Because, sometimes, I think that can be over general, and overbroad. But, at the same time, it’s just was so clear to me. The more scholarly articles that I read, the more books that I read, the more patients that I interviewed, that this is, number one, obviously, an interconnected family of problems. There is just no way to get around that. That which is not how you frequently have the information come to you. You’ll get your one diagnosis of POTS, or of Ehlers-Danlos. And then, you just learn all about that and maybe write a book about just that. And from where I sit, it’s like, “Well, yes, there’s important things to know about that particular condition.” But what I’m interested in is that there’s this whole huge family of conditions. It’s like a big kind of leaky boat that’s all sailing down the river together. And so, I wanted to see what research there was to that was looking at all of this collectively together. And then, that’s what I mean in terms of putting it together. There’s actually very few people–for my own part, I really stitched together a theory that I felt hung together. And then, really in the last five years, have found other people who are pretty prominent, who are now also saying the same things. And that’s been very affirming to me because I didn’t even feel comfortable publishing because I was like, “I’m not going to publish a book that’s like: ‘Here’s what I alone think.'” And, I really wanted it to be to at least be in the company of other people that I respected. But there have been more and more people that are–I think it’s too complex to kind of flesh out here. But, it’s just basically that a lot of changes have been made to the diet, to the microbiome, and that these are essentially setting up these bodies that are primed to come apart neurologically, immunologically, and endocrinologically. And so, you get a tipping point where people start to develop all of these other related neuroendocrine-immune problems. But it took a really long time to kind of stitch that together, really did feel like your corkboard, and the red string, and trying to bring down an international crime syndicate. It just feels like a lot of times, where it really felt, yeah, just  I had taken on too much, and that it was crazy, or that I was wrong, or that I was just out on the skinniest possible limb and hoping that I was correct. 

But, honestly, as time has gone on, I just I do feel that the research really does corroborate. Not that exactly everything that I think is correct, but that the broad outlines of what I’m talking about and what some of these other researchers are talking about is the best way to think of how these things all hang together.

Cassie:  Absolutely. I mean, definitely in various books that I’ve read by functional medicine doctors and such, it is a similar concept. But, you’re right. It’s only in the last five years or so.

Sarah:  Yeah. I remember when functional medicine–that’s obviously in the book. But I’d never heard that term before, I–somebody sent me something about functional medicine, and I thought it was like physical therapy, and I was like, “I’m not going to read that.” But then, I did start reading about functional medicine. And I was like, “Oh! This is what I was saying.” That’s like, “Oh! This is this is really helpful.” And, a bunch of people who are all really smart, and exactly as you just pointed out, the unifying characteristic of all these people is that they’re all people who have been sick themselves. And so, that that does give you a completely different perspective and ability to see things and empathize and believe all of these patients and start from there. Just start from belief instead of starting from skepticism, which is I think what a lot of scientists and researchers think that that’s the appropriate scientific pose, is to be constantly skeptical. And, in my opinion, of course, you need to maintain healthy skepticism. But, if you’re skeptical of everything or if you have skepticism that’s coming from a place of bias, but you’re unconscious of that, then you’re really going to miss a lot. And, I really think that that’s a lot of what’s happening here, is that there’s a lot of unconscious bias against women and believing women when they say they’re having these symptoms. And so, they don’t even research it. They don’t even look into it. And then there’s no data and that’s why it’s mysterious. It’s mysterious because they haven’t researched it. It’s not because it’s unfathomably complicated. It’s because there’s no research. 

Cassie:  Yeah, I’ve read some interesting articles about if a male or female is in the emergency room with abdominal pain, women have to wait some ridiculous amount of time longer to be seen than men. And then, when reading that, and you’re just, “This is so unfair.” You know? What the–? We have extra organs that they don’t have, you know. We should be heard. But then, you see some of those things of those cramp simulators that they put on dudes. And they’re suffering. And I say that with somewhat of an evil smile on my face. But it’s more of just them trying to understand a little bit of what it is like to be a woman. And so, you’re right, we do we need to be heard. And people who have had some form of experience going into, or even if there are male doctors who have had their wife had certain issues or something going on, I mean that also can be so valuable.

Sarah:  I think that that’s right. I think that that experience, it just–there’s such an emphasis placed on objectivity and how that’s the height of being a scientist. And I just really disagree with that. I think that subjectivity of actually experiencing something for yourself of not being the cool rational observer that is not down in the muck of the experience of the thing, being subjective has a lot of value. Obviously, you don’t want to be too subjective. You don’t want to be so closed in by your own experience that you can’t understand the thing anymore that you’re not far enough away. But, I think that we really overvalue the opposite that objectivity part of it, and that you really need to be able to, at least be able to–this is what being empathic is. To be in the experience of another person, and that’s an incredibly valuable skill I would say, chiefly, for a physician.

Cassie:  Yeah. 

Sarah:  That is, to me, I always think about this every job, you need skills. And it’s surprising to me that empathy does not seem to be a necessary skill for doctors anymore. And that, to me is seeing your tax accountant. And then they’re just, “Yeah, I’m not very good at math. I’m sorry.” And you’re like, “Wait. What?” Like a trial lawyer, and they’re like, “I am so afraid of public confrontation.” It’s like, “Whoa! Whoa! Well, then you should not be in this field.” Or if you’re want to be a man or woman of science, but you’re really bad at empathy, and are not interested in developing that, then maybe you should be in the research fields or something that where you’re not interfacing with patients. 

Cassie:  That’s such a wonderful point. One of the things that we wanted to bring to light with Chelsea and I show–because Chelsea doesn’t have a chronic illness and I do. But right from the beginning, she believes whatever my experiences or her own clients that have come in. And when she and I talked in the very beginning, I was like people–us, spoonies, as chronically ill people, need to believe that there are people like you,  her, Chelsea, out there in the world because we’re so often not believed. And that is um really something that we have wanted to try and bring awareness, I guess, with our shows. Because, yeah, I have experienced majority of people who have not had their own experience with pain, or an illness, or a disability, or an injury are less open to just being empathetic or believing what you have to say. And so, to find people who do just believe you right away, is really nice.

Sarah:   I agree with you. And to have  your show, and to have  somebody be an example of that for other people, I just feel  it’s so important in the same way that it’s nice to have other chronically ill people speak up and, “Oh, I can speak up, too.” I think the same is true for healthy people to speak up and to be empathetic in public, and to be believers in public, I think, really is inspiring to other people. It’s like, “Oh! I actually can do that. I could be in my own life.” 

Cassie:  Hey, Chelsea! You’re so important. 

Chelsea:  I know Cassie and I have had multiple conversations about what she’s feeling, what she’s experiencing. Because I want to better understand that. And then, I want to find ways of how can I communicate that to other people without chronic illnesses, so that they can better understand it. I know anytime I get sick with just a cold or a flu that I know I’ll feel like crap for a few days or a week, and not take away from that. But, I know that that feeling that I’m having for maybe that short period of time, is ways that maybe Cassie, or you, or anyone else with a chronic or mysterious illness just feeling daily. 

Sarah:  Yeah.

Chelsea:  And probably on a much higher level than that. And so, one thing that I love about your book is that it gave me a really deep insight into what the nasty cycle can look like of how constantly you work to feel heard  by doctors, just had the cycle of, “Yeah. You’re trying to get better. Yeah, it’s getting better. Oh shit! No, it’s not. Never mind.” You shared it in such a beautiful way in your book. I really felt that. I know I want everyone on the planet to read this book, because–

Cassie:  I know all the doctors need to read this book.

Chelsea:  Everyone needs to read it. Doctors need to read it. Healthcare providers need to read it. Healthy people need to read it. People with illnesses need to read it. Because I think it’s something that impacts everybody. And I know reading your book, since you talk about that there’s lots of things that can contribute to the development of a mysterious illness. Some being unhealthy, gut health, microbiome issues, constantly stressing out your body, and just not taking care of yourself. And so, that really inspired me to like, “Okay. Well, I should take better care of myself.” And because I really resonated with the fact that you were a go-go person, you were always doing something, rest was not something that you did as you were growing up. And reading that, I was like, “So, does that mean that I could be–” And I say “could” because everyone’s a little bit different. I could be one traumatic experience, one illness away from tipping the scales. And, I was like, “Oh, that doesn’t sound fun at all.” And, it kind of inspired me to like, “Okay. Let’s look. We have one body. How can we take care of it better in the way that’s best for us?” 

Sarah:  Yeah. And I just think that that’s so important, and it is this thing that I think we’ve just grown up in such a strange time. Because eating real food is not some health nut thing. If you just wind the clock back 60 years if that’s all there was. You didn’t have to be a crazy health nut, that’s just what there was. And the same thing was getting enough sleep, the same thing was just walking more, it’s just not 60 years ago. But 100 years ago, it’s just so many of the things that now you really have to make quite an effort to do them. But we know that they’re backed by science. It’s obvious to you if you get more sleep, or you exercise more, you feel better. The culture that we’ve created is the abnormal thing. It’s not being somebody that’s super crazy into health. But it feels abnormal to have to go against the grain and to do all these health and wellness things. 

And so, we’re just in this really tricky moment where it feels like you’re doing the cutting-edge thing, but it’s not. It’s the oldest thing. And so, I think that I have to say that’s one thing I have really seen. Because, as I said, been working on this for 10,000 years. And in the last two years, I’ve really seen wellness just sort of tip into the mainstream. It’s like everyone I talk to is just like, “Oh, yeah. I know all that.” I’m like, “You do?” For most of this time, where I’ve been talking about that stuff, everybody’s like, “Ah!” Roll their eyes, and nobody thought that–even doctors now are like, “Oh, yeah. That’s common sense.” I’m like, “Don’t even say that to me.”

Cassie:  It wasn’t that long ago where it wasn’t.

Sarah:  I’m saying that two years ago, don’t pretend, yeah. 

Cassie:  That’s that. You’re so right. So, in 2006-7 is when, well 2005, yeah. I think is when my mom got sick. And so, from 2005 to 2010, she was all about coconut oil for her skin. And everyone was like, “That is the weirdest thing. Why is she putting that cooking oil stuff on her skin?” And, I didn’t think much of it, because she always did “weird” stuff. And then, it was so funny, five years later, it’s the new thing. And then, when my son was little, and I breastfed him for the first year and a half. And then, he didn’t go straight onto regular milk, we did coconut milk at first. Because my mom explained the nutrition values, and I didn’t know. But I knew that I needed to trust her. And everyone was like, “That’s so weird. You’re giving him coconut milk.” You know? And then, five years later that that was the thing. And so, you’re right. It’s some of it is not necessarily–it’s always been around. And, it has been really weird to watch some of the stuff that she would do smudging with sage. And, I was like, “Ooh, my mom’s such a witchy poo or something.” You know, just everything is so weird that she does. And now, it’s so normal.

Sarah:  You can’t get away from that stage.

Cassie:  Yeah, yeah. 

Sarah:  It’s true. It is positive. It’s a little annoying if you’ve been promoting these things for a long time.

Chelsea:  Oh, I can’t imagine.

Cassie:  I’m sure.

Sarah:  But it’s ultimately, it’s positive. It does make me want to have a T-shirt that just says, “I’m right about everything.” 

Cassie:  Right? 

Cassie:   Yeah. Been there, done that. Got the T-shirt, exactly.  

Sarah:  Just along those lines,  my dad, he’s this character in the book, and in real life, who really goes from being the most doubting traditional medicine doctor that just–he’s the first one to write me a script for Paxil, all the way to the end of being the biggest champion of Functional Medicine. And really interested in science. He really, “Yeah, you’re totally right about the microbiome, and about microglia,” and about all these things that I’ve been talking about for a while. And it’s been amazing to watch that where I would send him article after article, and he would be so non-receptive, we’ll say. And then, now, I can’t get him to stop sending me these articles. It’s too much for me to read. But, it’s just speaks to that that the science really is coming around I think to a lot of these ideas that have been here for a while that have–and it really, to me, it speaks to the importance of listening to patients, and listening to clinicians who are having success. Before the studies have been done. Again, it’s just about believing people, and not–you obviously can’t believe everybody, and you have to apply rigor in science, but it’s important to not operate from a stance of just automatic disbelief of something that is kind of feels stuff you wouldn’t want to believe in alternative medicine, or wellness, or whatever any woo-woo stuff. It’s important I think for anyone to not have knee-jerk reactions on kind of either side of the aisle of this. To also not be totally skeptical of traditional medicine. And taking medications like that can become a real problem as well. 

And so, I think it’s just really needing to be as open as possible. It’s really important when you have one of these problems. 

Cassie:  Yeah, balance.

Chelsea:  So, Sarah, your book has obviously had a really big impact on both Cassie and myself. And we think that everyone needs to read it. But we would like  to hear from you of who you think needs to read this book, and what you want people to get out of the amazing thing that you have created and poured so much time and energy into? And you can really tell how much love and care went into writing your book.

Sarah:  Nice. So, the people I think need to read the book, or I would that I would like to read the book, certainly are WoMI’s, which is a woman with a mysterious illness, or MoMI’s, men of mysterious illness. Just, and primarily, just to have the experience of feeling understood, and feeling seen, and feeling validated. Because that is just obviously just one of the critical missing pieces for people like us. And so, I think this is one thing that that it can be–it can provide that for some people. And I know that I really needed that as I was going along. And it was really hard to come by. So, certainly, for that reason. And then, I really think, and I’ve been heartened to see this already happening. I really think doctors and people in the healthcare field. And I’ve had so many people write to me and said that they sent it to their doctor. And I’m like, “That is brave.” 

Chelsea:  That’s good.

Sarah:  Because it’s not it is not the most pro doctor book I feel. I did my best to try to be as generous as possible. But, obviously, it’s very critical in a lot of ways. But, I’ve heard from a bunch of doctors, and they all say the same thing, which is like, “All doctors should read this.” And it’s because the one those people who are saying that, they recognize this type of patient. They know exactly what I’m talking about. They know that this is something they see over and over and over again. That they didn’t know what the experience was like, and they didn’t understand any of the sort of nature of science, the emerging science around this. Because I’m the first person to say, “This is not  the definitive scientific guide to WoMI’s.” It’s not. But it is kind of some of the beginnings of people starting to understand these problems. And that’s important for doctors to understand that it’s not, this is not just an imagined problem, and it’s not just–because I think that some doctors when they believe patients are like, “Well, I believe that you’re sick. But I don’t believe that what you’re saying is wrong is wrong.” I don’t believe that POTS is a real diagnosis. They don’t believe that post-Lyme is a real diagnosis. They don’t believe that mold illness is a real diagnosis. So, I believe that you’re sick. But, I don’t believe it’s the things that you think it is. And that’s also quite damaging and it’s also not founded on anything because they don’t know. They’re not they’re not steeped in the science, or in the literature either. They just sort of don’t like it. 

So, I think I do hope that doctors and just people in the medical profession will read it. And, at least some people will read it. Because I really think that if just one doctor abstains from telling one patient that she’s made the whole thing up, and as a hysterical monster person that is a huge success, and that is a big deal. And so I–that’s what I’m hoping for.

Cassie:  We completely agree. Chelsea and I both started reading, or I think, I don’t know what Chelsea three weeks ago. We started reading the book maybe, three weeks or a month. And, we’ve recorded quite a few episodes since then like several a week because we’re in coronavirus time, it’s been a great time to record. We’ve literally talked about your book on every single episode.

Chelsea:  Yeah. It’s coming off. All the time.

Cassie:  Every single interview that we do, we’re like, “We’re reading this great book right now–” 

Cassie:  Yeah. And then, to my doctor, my counselor, my family friends, we totally agree that–and if one person can read it, it can make such a difference. I want to shift tunes just a little bit, because I want to make sure to ask you. 

So, with having the complex regional pain syndrome, that is a hell of a diagnosis to get. I actually hadn’t heard of it before reading your book. And I definitely got on Google to learn a little bit more about it. And then, I even started looking at some hashtags with it on Instagram to see people’s real-life stories about it. And especially when you talked about in the book that you couldn’t use pain medication, because it made you so sick. I completely relate to that I haven’t taken a pain pill in, I think, maybe coming on to three years, probably now, at least two, because they also make me so sick. That it’s like, “Okay, is the pain going to be bad enough that I just want to be nauseous and want to be throwing up?” You know? I’ll have to pick between the two. So, I related to that also. What are some ways that you are able to cope with the pain? I know that might be a little bit of a loaded question, and I’m sure that over time you’ve found different ways but for our listeners out there who have chronic pain. I just wonder if there’s anything that you could offer. Of things that have maybe worked for you. Even mindset stuff.

Sarah:  Pain is definitely, I will just be totally honest. That is the most difficult thing that I find to cope with because it’s just–it is so encompassing that it’s a lot of the stuff that you normally do to cope with chronic illness stuff, it blots those things out. For example, if you wanted to do meditation, it’s very difficult to meditate when you are in just excruciating pain. So, complex regional pain syndrome, I always describe is it feels like if you had a burn on your arm, and then you pour a little cayenne pepper on that. 

Cassie:  Ugh!

Sarah:  That’s what it feels like all the time. In my case, it’s in my vagina. And then, so it’s really, super bad. And so, for me, I’m just going to give my really honest answers. Anything that you can do to distract yourself in a healthy way, I think is–even though that’s not what my yoga teacher would say. But that is actually in real life that is actually what helps me the most. So, sometimes, that’s the least healthy of those, is just TV, or something like that. Watching some show that’s very engrossing and doesn’t make me feel bad about humanity. But also things like I’m better than I used to be. In terms of the fatigue is, I’m not bedridden anymore. And so, things like gardening are actually incredibly helpful to me. Not heavy gardening but gardening. That’s one of those things that I had heard about, and I was like, “Yeah, whatever.” And then, I started gardening. And it genuinely affects my just my overall level of–I don’t even know how to describe the exact emotion I have of response to being in pain all the time. It’s some mix of depression, anxiety, the sadness, it’s a bad feeling. And gardening really alleviates that for me pretty well. And so, that’s something. 

And then, one of the biggest things is just friends. It’s just having really strong social connections. Being able to talk to them, and them really knowing that I really need to stay in close contact with them. I think a lot of times, what happens with chronic illness, if you’re especially when you get really sick is that people start to pull away for a variety of reasons. They are afraid of illness. They don’t want to bother you. They’re like, “Well, she’s dealing with so much. I don’t want to add to her plate and be a burden.” There’s a variety of reasons people pull away. And so, I have found it’s really important to let people know that you do not want them to pull away. And like, X, Y, and Z are the following ways that are the best for you. So, one tangible example is, I use this app called, “Marco Polo.” Do you guys know Marco Polo?

Cassie:  Yeah!

Sarah:  So, Marco Polo. I really it because you get to actually have the positives.  Whatever dopamine, serotonin of seeing your friend I feel is really helpful but you’re not captive to the actual conversation.  If you’re tired, or you’re not feeling well, you can pause. Or you can play it at double speed. I have one friend that I do that to a lot, because she has really, really long, long messages. So, I really like that app because it really makes me feel connected to my friends. But it doesn’t take up too many spoons, and I like that. 

Cassie:  Yeah. That’s really great advice to share. And I mean, I guess, advice.  I mean maybe just more like experience is the right word rather than advice. Because it is so individual of the things that you do to get through those moments. Distraction, I agree that’s something that I definitely use and have to have connecting with friends. I’ve been in moments where I’m in the bathroom. And I’m in so much pain, and I’ve got my elbows on my knees, which then means I can’t feel my legs. And I’m cradling my face and my hands just sobbing, and I’m just like, “How am I even going to make it to tomorrow?” And I will, sometimes, call a friend, and just be, “I can’t actually talk right now, but I’m in so much pain. And I need to know that I’m going to get through the next hour.” And so, yeah. We need to find the things that help you get through. And so, I love that you have found gardening as just a way to make yourself feel happier, and feel relief, and feel enjoyment. 

It kind of goes into some other episodes where we’ve talked about the importance of delight and pleasure in your daily life, and experiencing that, and how much more you can cope with the really hard parts of life and living, and being in your body when you can experience delight and pleasure. And that can be from so many different things. I talked about it being from reading, and gardening is a wonderful one. I mean, connecting with the Earth, then watching something grow, and the green and fresh air. Yeah, thank you for sharing that.

Sarah:  Yeah. And I do think this is something I’m sure you’ve talked about this. But there’s a lot of–we get fed a lot of negative messages around pleasure and about doing things that it’s too indulgent or anything I just must disregard any messaging that you’ve internalized around that. It’s a little bit in the book, but a lot of times that is around stuff that is “feminine.” But if you were doing things that were masculine that were pleasureful, too. That we’re like, going to play golf, good for you, you know.

Cassie:  Yeah. 

Sarah:  Whereas if it’s doing something that is more feminine. It’s like, “Oh, that’s so indulgent.” And, you know. So, I think, it’s really important to honor the things that bring you pleasure, and that they’re completely worthwhile, and that you should be doing them because they’re medicine.  They make a difference to you.

Cassie:  Yeah. It is totally medicine. I completely agree. 

Chelsea:  Well, Sarah. It has been amazing talking to you. I could talk to you all day.

Cassie:  I know. 

Chelsea:  I love to hear what you have to say.

Cassie:  We both said like yesterday when we were working a little finalizing our outline stuff. We were like, “Okay, we need to not talk for three hours.” That’s right, Chelsea. we had to reign in our all of our excitement about everything. 

Sarah:  Well, it’s been so wonderful talking to you, guys, too. So, I really appreciate it.

Chelsea:   Oh! So, we have some exciting news for all of our listeners. We are doing a giveaway for Sarah’s book. So, if you take a screenshot of you listening to this episode, and you tag us, @therealspooniesunite on Instagram or Facebook, you will get put into a drawing. And we’ll have some more details on that in our show notes, as well. But, we want everyone to read this book, and we are going to make sure that at least one of you gets a copy in your hands very soon. So, yay! 

Other than that, Sarah, where can people find you if they’re wanting to kind of just get to know you a little bit better? I know you’re also a musician, and you’ve got your own music that you put out there, or they’re wanting to buy your book. Where can people find you on the internet?

Sarah:  On the internet, the best place right now is sarahmarieremey.com, and you can find the book there. You can also find links to Wolf Larson. Wolf Larson is my–the musical person that I am. And all of my handles are either “Sarah Marie Ramey” on Instagram or Twitter, or @wolflarsonmusic on Instagram, and Twitter, and Facebook. 

Cassie:  And we’ll put all those in the show notes, too.

Chelsea:  Thank you so much for your time, Sarah.  I said, your book is amazing and talking to you is amazing, and we just love the information that you’ve been able to put out into the world. Bringing awareness to mysterious illnesses, the challenges you go through in the healthcare system, and what people can kind of start to do to get out of maybe the very scary terrible hole that they may be in. 

Sarah:  Well, I love you guys. You’re fantastic. I’m so in admiration of what you’re doing, and I’m so glad that you had me on. So, thank you.

Cassie:  We hope you enjoyed today’s episode. Please write us a review to help us reach more people like you. 

Chelsea:  If you’d like to connect with Cassie and I, you can find us on Instagram, @therealspooniesunite. You can also join our private Facebook community, Spoonies Unite, or you can visit our website, therealspooniesunite.com for all sorts of resources and to stay up to date with our current projects. And don’t worry, you can find all these links in the show notes below.

Cassie:  Thank you to our wonderful spoonie patrons for all your support. And you can become one, too. That’s right. All you have to do is go on over to patreon.com/therealspooniesunite, and you can get all sorts of extra goodies like videos of our episodes and more.

Chelsea:  Any support is greatly appreciated. It helps enable us to create more content for all of you, as well as make this podcast sound better and better. 

Thanks for listening. We can’t wait to be back in your ears soon. 

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