TW/CW: this episode includes a graphic description of vaginal surgery.
Sarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. She is a graduate of Bowdoin College, received an MFA in creative nonfiction writing from Columbia University in 2007, and worked on President Obama’s 2008 campaign. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is also the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, and chronically comorbid conditions CRPS (constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve. A cautionary tale to both fellow WOMIs and the medical establishment, Sarah challenges us — all — to do better.
Key links mentioned in this episode:
Tune in as Sarah shares:
- that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003
- her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics
- her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis
- that these experiences were the beginning of years of pelvic pain
- that as tests began to come back negative, she was immediately referred to psychiatric counseling
- the disparity in funding between AIDS, cancer, and ME/CFS research
- a discussion of medical bias in research and practice
- that she got her CRPS diagnosis 10 years into her medical journey
- that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis
- that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants
- that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain
- that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief
- the role of stress in chronic illness: and why so many chronic illnesses are modern problems
- that mistreating patients actively contributes to the worsening of disease
- how her relationship with her parents (who are both doctors) evolved over the course of her illness
- that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors
- aspects of the feminine that influence medical bias
- that “pathological niceness” is a personal trait she has modified in order to better serve herself and others
- why the doctor-patient dynamic is one of imbalanced power
- how she practices mindfulness around her “spoons”
- that she’s recently gotten an ileostomy in order to manage her digestive symptoms
- the importance of functional medicine in her health journey and the future of medicine
- how she envisions the future of medicine and patient-hood
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Lauren: Okay guys, thank you so much for joining us. I am here today with the author of The Lady’s Handbook For Her Mysterious Illness. You may also know her as musician Wolf Larsen. Everyone, welcome Sarah Ramey to the show. Sarah, thanks for joining us.
Sarah: Thank you so much for having me.
Lauren: It is such a pleasure. As I mentioned to you before we started the interview, I had the pleasure of finishing your book just before getting on this call. And it is truly a joy to read. It’s out now I believe, am I right?
Sarah: Yeah, it just came up.
Lauren: Yeah, literally just. So I’m very happy to have you on the show. You live with multiple chronic illnesses, invisible chronic illnesses, and you’re going to walk us through a bit of that journey. So why don’t we start at the very beginning. I know it’s a tall order. But can you tell us when and how you first realized something was going on, and what steps you have since taken to control your health?
Sarah: So, for me, as we go through in the book, I have a pretty complex problem. But one of those problems is chronic fatigue syndrome and anybody that has chronic fatigue … there’s sort of two ways it comes on. There’s the gradual, slow onset, or there’s the abrupt onset. And in my case, it was the abrupt onset. I was a senior in college at Bowdoin and I was extremely active; I was directing the school musical and I was in a rock band and I was in an a capella group. But I had these really persistent urinary tract infections. And so I went to a bunch of doctors; we kept treating with antibiotics, it didn’t really go away. And so I finally went to this one urologist over winter break who was a colleague of my parents; my parents are both physicians. I went to this doctor and he said, “Well, I actually don’t think you have a UTI at all. I think it’s just muscle spasm. So what I’d like to propose is this procedure called urethral dilation.”
Which is when they put an instrument inside the urethra and they stretch or rip it a little bit.
And just with a little bit of Lidocaine jelly, right there in the office.
Lauren: You’re making it sound much less gruesome than it actually was.
Sarah: Yeah, well, that’s what it’s supposed to be like. That’s how he described it. He was just the way I just described it to you. He was, like, “It’s really no big deal. A 90-year-old woman, we just did it for her, down the hall. She did it; you can do it.” That 90-year-old woman always sticks in my memory, because for me, that was like, okay, it’s a piece of cake, I can do it. And so I go in, I saddle up, and he starts with a procedure and it’s really not supposed to be very painful … and it was just like being hit by a bolt of lightning in my urethra, and it was so, so painful. It was just this horrifying sort of experience … in the next few minutes in the office, he was kind of yelling at me and I was screaming and crying. It was horrible. But, I really thought that once it was over, that was tough …
Lauren: But that’ll be it; that should solve everything.
Sarah: Exactly. And not just that it was gonna resolve my UTI, but obviously that it wasn’t going to start the beginning of this horrible snowball of illness that would roll down the mountain for the rest of my life.
Lauren: And this was in the early 2000s when this happened.
Sarah: Yeah, this is 2003. And so I go home that night, and I’ve got some real pelvic pain, but I’ve had some pelvic pain before. That’s why I was there. So I was, like, well, this is just a little bit worse because of the procedure. I don’t feel good. But of course I’ve just been through a shock and I’ll be fine by tomorrow. And then that night, I wake up and I’m drenched in sweat, 104 fever. And I’m shaking. I was home and I go down to my mom’s room, and she knew that I had become septic. She took me to the hospital. I was hospitalized for a week, and I had become septic … they didn’t know why, they’re like, “Who knows? Weird things happen sometimes in medicine and you’re septic but you’re so lucky that we caught it right away.” And I was put on all these antibiotics. And again, it was, like, “You know, this is really unfortunate, but of course, you’re gonna go home and you’re gonna be fine. It’s gonna be just fine.” And it wasn’t fine. It was the beginning of just incredibly severe pelvic pain. All of a sudden, I was so fatigued and … fatigue is not the word … it was mortal exhaustion; I was constantly sleeping all day long. And the thing that for me, I think, that really made me feel like something was genuinely wrong, was my muscles hurt. Everything hurt all over, like I had the flu. And so that to me was like, I know what it feels like to feel sick, and this is it. Something is clearly wrong. But still, we just thought that it would get better. So I kept going. I went back to school on an IV line of antibiotics that I carried around with me. I just started to get worse and worse and worse. And that’s when I started to go back to doctors. It was clear that something was wrong and something had begun that was bad. And so I went to a million doctors over the course of really the next year to try to get to the bottom of it. And this is where, normally my extreme privilege — being a white lady of relative economic privilege, with doctor parents — really should have been the thing that prevented me from falling into a black hole in medicine. And it didn’t.
I saw doctor after doctor after doctor, and they all took it really seriously in the beginning.
But as all the tests came back negative, negative, negative, that’s when what happens to, I feel like every single one of us that has this type of illness … when the tests said there’s nothing wrong, then the doctor started to say, “There’s nothing wrong with you, and what I would recommend is psychiatric counseling.”
Lauren: Another classic trope we’re hearing in this story, isn’t it.
Sarah: Yeah, exactly. So that’s how it began. And that was the experience in the first two years, just constantly being battered around the system of having very severe fatigue, feeling sick all the time, and really severe pelvic pain. And also my colon stopped working. And being told, even though I had all these really severe problems, that it was just psychological. As one doctor said to my parents, while I was sitting right there … he looks over his spectacles at my parents, and he goes, “Well, like so many other young women her age, this problem is obviously psychological.”
Lauren: I’d say that judgment is more the psychological problem than anything else.
Sarah: That’s exactly how I feel, that this is not a problem in the psyche of the patient … this is a problem in the psyche of the physicians.
Lauren: And it’s systemic.
Sarah: It is systemic. I think it’s unconscious. It’s like so many other problems in the culture of unconscious bias, but I don’t think it’s an active act of malice, usually. But that doesn’t matter. It doesn’t matter that you have unconscious bias; it is still your responsibility to root that out and to not inflict that on other people.
Lauren: Well, and I think one of the things you really get to in your book is the fact that right now, we’re looking at … and we’ll get more into this further along in this interview … but right now, we’re looking at these kinds of chronic illnesses that are largely affecting women that are being overlooked and brushed under the rug. But there will come a time when they will affect more than just women, and the medical system will have to respond. So if we don’t take precautionary action now, and start adopting functional medicine principles, which you discovered through Dr. Mark Hyman and others, there is going to be no way to stop this epidemic from continuing to flood our humanity.
Sarah: Which arguably has happened. I really think we’re way, way past the tipping point with all these problems.
So many people are so sick, but it really is because it’s predominantly women that it’s somehow completely invisible.
It’s just this big … I always say to people, “What is it about these illnesses that makes them so mysterious? Nothing. They’re not different from a regular illness. It’s because they’re not researched. It’s because they’re not doing the work to figure out how to see them, right. How to demystify them. That comes through research, and that comes through funding, and that’s how the mystery’s solved.
Lauren: Yeah, I mean, you mention in the book the sort of disparity in funding between cancer research, HIV/AIDS research, and ME/CFS research. Just the fact that there are doctors who you quote in the book who talk about ME/CFS being far more severe than HIV/AIDS, in many cases, and yet being proportionally funded less than 1% in comparison.
Sarah: Right. And to be clear, HIV/AIDS, obviously when it progresses and it’s uncontrolled, when it’s not taken care of, it’s worse; then it’s terminal, and it’s a misery. But as anybody that takes care of both of these conditions, they all say the same thing … that the entire experience of having severe ME/CFS is what it’s like to be in the very final end stages of AIDS or cancer or one of these horrible diseases. And so the idea that they would be treated so disproportionately is insane. It does not make any sense. And most people, I think, are not aware of how disproportionate the funding is for these types of things. So cancer and AIDS, they both get sort of in the $6 billion-plus for each, and ME/CFS … last year, I think the funding was $14 million. If you’re looking at that on a graph, the ME/CFS research wouldn’t even register. It’s literally like having one penny versus $1,000. They’re in completely different stratospheres. And so of course, we don’t understand. Of course, it’s a mysterious illness because they’re not doing the work to try to understand. We haven’t solved cancer, and that’s with $6 billion every year. The idea that we could understand ME/CFS is ludicrous. That’s what bothers me a lot about whenever a doctor comes in and authoritatively says, “Well, if there was something really going on here, we would know.” And it’s, like, “No, you wouldn’t. You’re not trying. You’re haven’t conducted the studies.”
Lauren: Well, here you are, almost 20 years later, and you’re still figuring things out. I mean, by the time you got to the end of writing the book, which is 2019, 2020, right, you were at this point diagnosed not just with ME/CFS, but also with a host of other very tangible diagnoses that still took doctors years and years to give you.
Sarah: Yes. Notably … also, these are all commonly co-morbid with chronic fatigue syndrome … which is important because just like heart disease, diabetes, metabolic syndrome that commonly run together, that are commonly co-morbid with each other, these problems over here, it’s very common for them to go together. So I also have something called POTS, or postural orthostatic tachycardia. That’s a really common WOMI problem.
So, WOMI … we haven’t said this, is A Woman with a Mysterious Illness.
It’s a word that I use to put a big umbrella over all of us to collect this group of patients that is disparate right now. But it’s not disparate. I do think that it’s all connected, sort of a family of neuro/endocrine/immune problems, that there’s sort of a neuro/endocrine/immune branch of the same chronic illness tree. That we can see when it affects men and women equally. And we can’t see it when it predominantly affects women. Like that branch is, like … woman? Sorry.
Lauren: Which is also due to medical bias in research. Not just in treatment, but also in the fact that what we’re researching … and we’ve talked about this on on the show before … what we’re seeing in research predominantly, is male tissue, male animals. And very infrequently are we seeing that balance being met. You mentioned this in your book as well … it wasn’t until the ‘90s that it was mandated that any kind of publicly-funded research include women.
Sarah: Yeah, exactly. My grandmother was actually one of the scientists that lobbied to have that change made at the NIH. I think most people just have no idea that’s the case, that that’s something that would have been sorted out maybe in the ‘60s, or during the women’s movement, The 1990s, like ’91 … that’s recently. There’s another statistic that it takes about 17 years for medical research to work its way into your garden-variety doctor’s practice.
Lauren: I would say it would take longer than that. That sounds a very fair estimate.
Sarah: Right. Yeah, that’s the average. And so if that’s true, then the first studies that they started legitimately including women … and they obviously have not reached full parity … that would have only worked its way into your regular medical doctor’s office in 2007 or 2008. That’s really recently.
And that’s just with the very, very beginning of that really important shift in studying men and women’s bodies in any sort of equal measure.
Lauren: And that’s also presuming that these measures are actually stuck to in the actual research. We know, in practice, that’s not the case.
Sarah: No, definitely it’s not. It definitely is not. I actually had a really good doctor recently … I was responding poorly to a medication, and I was so used to apologizing for this, because I was so used to, if I responded badly for them … “Ah, you’re so over sensitive.” As if it’s my fault. I’d kind of internalized that, and I started apologizing to her about this. And she was, like, “What are you talking about? Do you know that most medications are only tested on white middle-aged men? So however you’re responding to it, that’s totally legitimate. And that’s probably just because it’s not in the literature, because they didn’t study people like you. You should feel completely legitimate in the way that you’re responding.” And I was like, “Um, you’re right.”
Lauren: I’m floored by that. That’s like the nicest thing a doctor’s ever said to you!
Sarah: I know; I couldn’t believe it. I was just, like … but that is the appropriate science-based response. That’s what struck me about it … oh, this is somebody that’s actually paying attention to the science, that doesn’t have their own emotional overlay on top of the science, that is pretending that emotional overlay is the science.
Lauren: So you’ve mentioned … okay, we’ve got ME/CFS, we’ve got POTS … what else are we working with here?
Sarah: I’ve also got complex regional pain syndrome (CRPS).That is a very severe pain syndrome that starts to accrete — or it can come on suddenly. It’s usually secondary to some kind of nerve damage. Which, in my case, what they figured out later, is that I had had pretty severe nerve damage from that initial incident. We didn’t know that until really recently. And so, complex regional pain syndrome … I was finally diagnosed with that, it was 10 years in before I got that diagnosis. But that was a really helpful one because that’s like a pain syndrome that is so far beyond regular chronic pain. But that’s what I had been saying. I was like, this is not like back pain. I have fibromyalgia-type pain, and that’s really bad.
But this is completely different; this is like an open wound with cayenne pepper poured inside it.
Lauren: Well, and this was something that you also had that was persistent throughout your entire experience and related to the left side of your body … because it ended up radiating down your leg and everything, but it started in your labia, and it almost presented like vulvodynia, but obviously wasn’t that, right?
Sarah: Right. I’d been diagnosed with vulvodynia for … forever. But even my doctors, who were, like, “Obviously this is the worst case of vulvodynia we’ve ever seen,” they didn’t take it a step further to say, “Well, what it actually looks like is this other thing called complex regional pain syndrome, which involves all the swelling.” I had a lot of swelling in that area, where it starts to spread over the body; where it’s so severe that even just like the teeniest Q-tip touch hurts and makes it swell. That was what I’d been describing for 10 years. And nobody took that seriously, until the Mayo Clinic. I didn’t have the best experience at the Mayo Clinic, but they did diagnose me with that. And that was really helpful.
Lauren: Well, and many years later, subsequently, you found out that it was actually all connected to a neuroma, right?
Sarah: Yeah, so it’s not exactly a neuroma. It’s a very dense, mass of scarring and scar tissue on a network of nerves in the left side of the vagina — that they found in 2017. So really recently. Initially I had this incident with a urologist that was insanely painful, and was told, “We have no idea what’s going on here.” And then initially, they did do a trans-vaginal sonogram to look in that area, which is the right thing to do. And it showed a thickening and a little mass on the left side of the vagina, and they just …
Lauren: They just didn’t acknowledge it.
Sarah: “Oh, it’s nothing. Don’t worry.” So why am I there? We have emails from the time … like, “What do you mean it’s nothing? I’ve explained describing pain right there. How can it be nothing?”
Lauren: And when we say pain, also you got to a point where you fashioned a sling for yourself. So when you sat down, you wouldn’t actually be sitting. You were sitting on your thighs, you were mostly lying down. You were wearing dresses, you couldn’t even wear pants. It was affecting your everyday functioning.
Sarah: It was 100% of the time, 24 hours a day, just extreme, extreme pain. It’s still pretty bad. I have one pair of pants that I found at the Gap in 2011, so I just have this one pair that doesn’t hurt that much. But it was so extreme that they clearly should have repeated all those tests. They clearly should have said, “Oh, we actually did find a thing right in the area that you’re describing.”
There is no reason in the world to have swept that under the rug.
But that is what happened, and they just said the same thing over and over again … “I know that you ‘think’ that this is what’s going on. And this is what happened to you, and you were hurt by this big bad doctor. But we guarantee that is not what happened to you. And in order to repeat that trans-vaginal sonogram, you’d have to be under anesthesia.” Because the pain is so bad; it’s an internal exam. “And so we have to put this thing inside of you. And booking an OR for that … we’ve never done that. That would be an indulgence, we’re not going to do that for you and your harebrained idea that this is what’s wrong with you.” And it was what was wrong with me.
Lauren: And meanwhile, this thing was growing and getting bigger and bigger, to the point where the doctor was able to feel it and get his hand around it. And, you were going to see myriad specialists who were — particularly these male specialists, right — who were trying to treat, or do biopsies. I sat reading the book, and I wanted to cry for you and hug you at the same time. Because you had these experiences where these people … I mean, you talk about the impact of stress, and external stressors on our health and our immune system. And what you were experiencing were these horrible medical traumas where biopsies were being taken without any anesthesia. Even local anesthesia wasn’t working. But you then weren’t offered pain management afterward and were called an opioid seeker. It’s unbelievable to me the things that you went through. And had a device installed in your body incorrectly. Totally by accident because the surgeon misunderstood, which caused you even more pain. It’s unconscionable to me what the medical system has forced you to endure.
Sarah: No, it’s insanity. And it’s, like, at every stage … I’m glad there have been other people around to witness all of it. We do talk about stress in the book, and how stress is integral in a lot of these problems. It’s not the only thing but it does exacerbate and, I think, play a pretty big role in the development of a lot of these neuro/endocrine/immune problems. Stress does play a pretty significant role. I think that as they do more and more research here, that becomes clearer and clearer. Put aside the moral reason to not treat these patients like sh*t, treating these patients in such an abysmal way where they’re just basically abused in the system, it makes them sicker. It is actively contributing to the worsening and acceleration of disease. To me … your response to me, wanting to hug me … that’s how I feel. I just want to throw myself on the tracks in front of all of these WOMIs, just to prevent physicians from … not doing just the wrong things physiologically … honestly it’s fine that they don’t know what to do, that they don’t know how to treat the disease. That’s okay for now. What really is the problem that they can stop overnight — but hasn’t for the entire 17 years I’ve been sick — is the way that they treat us, and the way that they are so psychologically destructive in convincing you over and over again that you’re a liar, or making it up or whatever … all these horrible things. That, to me, is just …
Lauren: That’s gaslighting in action.
Sarah: With the severest possible consequences. My case is a really good example.
I had a doctor literally cut a piece out of my vagina in front of me and tell me that my response — that it was extremely painful and my freaking out — was my fault.
Lauren: Meanwhile, the nurse was sitting there saying, “I’m so sorry.”
Sarah: Yeah, I mean, it’s kind of hard to describe what happened. It’s in the book.
Lauren: It’s worth reading!
Sarah: It was a horrible scene.
Lauren: That’s why I say, you’ve been through these absolutely gruesome, shocking … like straight out of Saw. And I’m not even exaggerating. That level of experience, that level of pain. It’s great because we can laugh about it now, because these things are in the past and you have so many more answers now, But that you had to go through that. And as you say, you’re somebody who has physician parents, who’s relatively privileged when it comes to your place in society, and your financial ability to continue to pay the bills on these absolute misuses of your trust. That you were duped in the midst of all of that is frightening enough, let alone what’s happening to less fortunate members of the community. I just think it’s such a wake-up call for us, and as you say, the answer starts with an F and ends with -unctional medicine. That in many ways is the answer. But in many ways, it’s also about looking at everything we’ve established systemically … not just the medical system, but why bias exists. Yours is a cautionary tale, but it’s also important for us to understand that you’re still here, you’re still alive — but you very nearly died, more than once.
Sarah: Yeah, more than once. And I feel very seen when you say it’s like a scene from Saw! It is, I know!
Lauren: Really, I think to myself, how could they possibly … and then you’re bleeding and they put you in a diaper, but of course the blood’s congealing and sticking to the diaper, and it’s, like, how could they even?
Sarah: And then I’m not the one that asks for pain medication. The nurse is, like, “You’re gonna need pain medicine.” Yeah. I’ll take one Percocet. And she goes out to ask the doctor and comes back in and says, “He actually doesn’t want to give that to you. We worry about patients like you.”
Lauren: People like you.
Sarah: What you were saying before, if he had just looked in my chart … I don’t take pain medications at all because they make me so somnolent. My energy is already so poor that I would be non-functional … or I am non-functional. I don’t take them. So I’m not a patient like that. It’s just …
Lauren: It’s just truly insulting and absolute insanity. It is. You mentioned a minute ago the people who you’ve had alongside you throughout this journey, your parents. Can you talk a little bit about how this experience and the ongoing experiences impacted your relationship with them — particularly as you’ve learned to become your own advocate, and as you’ve seen them advocate for you?
Yeah, we have been through a real journey, my parents and I!
In the very beginning, they were basically ferocious protectors, trying to get the best possible medical care. They thought I had some strange tropical disease, and were trying to get to the bottom of it. And then, definitely as my other physicians started to say that they thought it was psychological … my parents didn’t buy into that wholesale, but they certainly entertained that idea. Maybe you should just try it to just see what happens?
Lauren: Like, heads up, you’re gonna need this later down the line anyway, because of all the medical trauma! Better get started now!
Sarah: Yeah, exactly! But then also, something that began to happen … I began to not trust them because they were like avatars of this system that was being so abusive to me. And so I didn’t want to go to them anymore for a while and get them involved, because they would get me back on the medical merry-go-round. And then that would be so painful. So there was a quite a bit of time when we were really at odds with each other. And I would just say that it was nobody’s fault. It was not their fault. It was not my fault. It was just a terrible situation, and nobody knew what to do. But then especially later, I really became much sicker, starting in 2011. Through until about 2016. And in that period, they started to change and to come around to really thinking about things through my eyes. I chalk that up to a couple of things. One was that I was just so sick that I was not able to limp along and pretend I was fine to the outer world while I was privately suffering; I did that for a serious period of time. I was living at home with my mom, and I was basically unable to get my own groceries or shower, do anything. So they were really confronted with how sick I had become. But also I had started to work on this book. And so I had done a lot of research about these types of illnesses, and I just kept sending them all of this information. And in the beginning that did not go over well. They were, like, “You and your ideas. Gut bugs, gut health has nothing to do with it … ”
Lauren: Which by the way, there was a gut bug. There was a gut worm, guys! There was also a gut worm in this story!
Sarah: There was a gut worm. We don’t know exactly what role that has played in my life, but I definitely had a really bad tropical parasite. But just in terms of microbiome disruption, when I first started learning about that, it was not a part of regular medical conversation at all. Anyone I talked to about it was, like, “Stop Googling! … “
Lauren: Well, doctors told you to do that, too. But of course, that was the only place you were getting information.
Sarah: Yeah. But I just kept sending it to them anyway, because I wanted them to try to understand. So I think it was a combination of them seeing how sick I’d become, but also really reading more and more about the science that they started to change the way that they were thinking about it. And then to the point where now, you just couldn’t ask for better parents and advocates.
They have gone through such a radical shift in themselves to be believers and champions of wellness everywhere.
Lauren: And I guess better doctors, as a result, too?
Sarah: Definitely. And even just so that they can shut down that thing that we were talking about before, of that psychological abuse essentially, of telling patients that they’re crazy. I think my dad definitely did this; I think he would say that. He stopped doing that and then he became this physician that WOMIs would seek out in Washington, DC because they knew that he knew what he was talking about, and that he would at the very least take them seriously, treat them with dignity, treat them with kindness, etc. In the absence of actual medical care, you can at least do that; every physician can do that and should be doing that. And that’s sort of my main hobbyhorse. There is no scientific basis to be treating these patients the way that they’re treating them, that they’re just a bunch of liars and over-sensitive ninnies.
Lauren: Well, there’s data that shows that that actually doesn’t help anyone. When you remove your ego and you participate in someone’s care, rather than creating medical trauma, then you’re actually much better equipped to treat someone.
Sarah: Yes, exactly. So even if your kindness is just inducing some sort of placebo effect, at least you should do that. But beyond that, there’s just plenty, plenty of scientific evidence to show that there’s clearly something wrong in all these different types of related problems. And it’s not psychological. It’s definitely exacerbated by stress, but it is not psychological in the sense that they’re suggesting that it is. That it’s like a hallucination.
Lauren: Or it’s “hysteria”.
Sarah: Or hysteria or hypochondria, any of those things. It’s just not that. I don’t want to shame mental illness, but it’s just not that … that’s not what is going on. A cancer patient might be depressed, but that is not what is causing their cancer.
You can’t tell them, “Well, we’re not going to do any real interventions here. I’d rather you just weren’t and saw your psychiatrist.” That’s not medical care.
Lauren: That’s negligence.
Sarah: Yeah, it’s negligence. You would have your medical license stripped if you did that. But that’s basically the routine treatment of patients like this. And it’s wrong.
Lauren: But that said, it seems like you’ve maybe found your heroes in the system, you’ve found a medical team that is getting you back on the right track. Is that right?
Sarah: Yeah, it’s definitely better. I’ve got some doctors that I really like. My condition is not fully managed at all. It’s just that it’s a lot better than before where I couldn’t get out of bed. I couldn’t do anything.
Lauren: Yeah, look, you’re here in this interview. This is great. We know this is a marked improvement, yeah.
Sarah: Very. This is just one of those things where, if you haven’t experienced these types of things yourself, people just think of it as a binary. Either you’re bedridden, or you’re here and you’ve got makeup on and so you must be fine. Well, those are not two binary things at all. There’s a huge area in-between. I’m kind of somewhere in the middle. But I definitely have found some people on my team; basically, I don’t allow myself to ever go back to anybody that treats me in the ways that we’ve been talking about. That doesn’t mean that I don’t still experience that. Because I’ll go to a new specialist or somebody that I’m trying to get better help from, and I still experience that all the time. But that type of person, now, I definitely won’t go back and see them. But I also usually will speak up and will say, “I would really encourage you to learn more about this, and not say what you just said to me. Don’t do that. It’s not helpful.” Other people may not say that because they don’t feel comfortable and they don’t want it to boomerang back on them.
But since I’m not coming back, I’m going to say it.
Lauren: But that’s taken you years to cultivate that attitude.
Sarah: 17 years!
Lauren: It’s no joke.
Sarah: I am so not constitutionally set up for that type of thing. I just want everyone to be happy, and everything to be good and nice.
Lauren: Well, that’s very typical of our expectations of the feminine, isn’t it, as well. This idea that the feminine energy that balances the masculine energy is one of forgiveness and nurturing. But when it comes to your health, and sometimes it takes a long time to learn this, you can’t take that sort of backseat role anymore. I think, for you, the the bright spots along the way of this journey have been when you’ve been able to say, “F*ck you.” The rage has fully set in, and you’ve been able to fully embrace all of those parts of who you are.
Sarah: It’s really true. It is true that in the book, those are all the best parts. All those parts where I’m really angry. And it’s because I just do think that so much of the “journey” for me has been unlearning niceness. Pathological niceness. That’s totally not in the service of me; it’s not in the service of the doctor to get no feedback that what they’re doing is harmful. That’s not good for them either. So I think it’s very important to reclaim that part of yourself. However, if that’s been disowned inside of you, if you’re in this situation … it makes sense if you are in a really imbalanced power dynamic where you speaking up or talking back usually is gonna boomerang back on you. If you’re in such a weak position where you have no doctors, you have no medical care and your health is in freefall, it’s very difficult to talk back or to even feel like you can do that. So I don’t mean to gloss over that part of it, because that’s real. It wasn’t me just being super nice. It was also trying to protect myself in a really scary place.
Lauren: So, what’s a typical day looking like for you now? You said you’re in the middle of that gray area between wellness and total illness. So can you tell us how you’re working to balance the demands of work and life? You went from working as an Obama campaign staffer, and working full-time as a musician. I’m wondering how that has manifested as you have been reborn — again, with your book and all of the projects that you’re working on now.
Sarah: Yeah, so I can basically work a little bit less than part-time before I just completely have to be back in bed and laying down. But I have the energy to do, I would say, maybe a little bit less than half of what I would normally be able to do.
But I’ve just really embraced … that’s the best I can do, and that is enough and that that’s so much better than the zero percent I was only able to do for a long period of time.
So I’m really careful about … right now I’m just a full-time writer, and that’s all that I’m doing. And so I have a lot of control of my schedule. I’m really serious about not working past where I’m able to, because I always push myself way, way, way farther than I should. And I used to do what I think what most people do, which is try to psychologically reward yourself for being tough … you know, you’re so busy and you’re so stressful, and that means that you’re productive.
Lauren: Well, because we glorify overwork, don’t we.
Sarah: We do. And so I feel like I’ve really gotten a lot better in that way, where I just do not glorify that anymore. I’m sort of allergic to it, and the people that I know that say that, I’m, like, “I can’t listen to you.”
Lauren: I’ve started calling it out, when I’m with groups of women who are maybe entrepreneurs or trying to do something with their business. And I’m, like, ‘We all need to stop this language of ‘I’m so busy right now,’ because it doesn’t serve anyone.”
Sarah: Yeah, there’s lots of studies about this, that productivity goes up when you increase the amount that you’re resting and the amount that you’re off. It’s a false way of signaling that you’re doing a great job. It’s usually not real. Because one thing if you actually were crushing it and getting tons of work done. Usually people are not, and so they’re just stressing themselves out really badly.
Lauren: And it will literally make you sick
Sarah: And making themselves sick. And so I’m quite serious about practicing a lot of self-forgiveness around … I have done my however many, three or four or five hours of work.
Lauren: But again, this has taken 17 years to get to that point.
Sarah: Yes. And still even saying it out loud right now … there’s probably people that are gonna be like, oh, I wish that I could do that. You’re so lucky. But I have been in the exact same position before, where I would push myself to work 10 or 12 hours — and be so sick by the end of the day.
And I still would have gotten exactly the same amount done that I’m getting done now.
I just make sure that I turn everything off. I have the part of the day that my brain works the best for doing work, from about seven until noon. And then after that, I just don’t do computer work; I’ll do something like this … talking, interviews, things like that, but I don’t do any more computer work. Also something I talked about in the book, which is complicated … but when I had that pelvic injury, it shut down function in the colon. It just completely stopped working and I had to take all these laxatives, which created this horrible thing we called ‘The Bowel Olympics’ because I was having to take like tons and tons and tons of laxatives every day just to empty the bowel.
Lauren: And when you say tons, you were taking the amount that someone takes to go for a colonoscopy — daily — just to have a bowel movement.
Sarah: Yes. Actually, I just had to do a colonoscopy prep. And so it’s a little bit less than that, because I’ve just experienced it again. I would say maybe like three-quarters. Because as it began, for the first half of it, I was, like, this is what I do every day! But then as it started to proceed … a colonoscopy prep is truly horrifying, I was throwing up. But very close to that. No one should be anywhere near that amount of laxative use. But that’s what was necessary to empty the colon so that it wasn’t pressing down on all those pelvic nerves. Anyway, so I just had an ileostomy; it’s one of the things I talk about in the book that I might be doing. I had that done in December, and the main reason we did this was to free me from The Bowel Olympics. So the last few months since I’ve done this, I’m, like, I’m free! I get to go out and socialize with people again in the mornings! And now it’s the coronavirus.
Lauren: Yeah, now you can’t socialize! Oh, the irony. But this does mean that it frees you up in terms of not having to be tied to the toilet, and tied to having to take suppositories or other laxatives in order to just use the toilet on a regular basis.
Sarah: Yeah, and this is a really good example … I do talk a lot about functional medicine in the book, how important I think this is as a way of thinking about health and all illness. But I also don’t think that wellness stuff, and food as medicine, is enough for a lot of cases. And I’m a perfect example of that. I needed multiple surgeries, because we just could not, no matter what we did … with any type of wellness intervention, there was just no way to wellness this away. A huge wad of scar tissue around all your pelvic nerves that shut down colon function and caused all this pain. That’s something that’s different, and you need to do what you need to do.
In my case, I look forward to the day that I’m able to take advantage of the fact that I can leave the house in the morning.
I guess I could just start going for walks.
Lauren: Six feet social distancing! Maybe we’ll make it 12 feet, just in case for you. Because you’re very special! (laughs)
Sarah: I know!
Lauren: In the best ways! So we’ve talked about how you’ve been in situations where doctors haven’t believed you. And this has been a very common thread in your experience, and the experience of so many other WOMIs. I’m wondering if you can walk us through one of those experiences that really maybe sticks out for you as a very key moment in your health journey, somewhere where you were confronted and forced to validate the fact that you had something going on that someone didn’t believe — whether that was a practitioner or a friend.
Sarah: The incident that really does come to mind is that that person at the Mayo Clinic, that incident with that guy.
Lauren: Nobody would know unless they’ve actually read the book. Because we know that you had one good doctor who gave you CRPS diagnosis and another one who was, like, “Mmm, can’t help you.” Hearing that from someone at the Mayo Clinic is got to be a bit of a blow.
Sarah: Yeah, it was. I saw five other doctors who all said the same thing — that it was just me.
Lauren: That it was in your head.
Sarah: Or if they didn’t say that, specifically, they were like, “Well, we don’t exactly know what’s going on here. But I want to recommend a regimen of anti-depressants and anti-anxiety medications, and a series of interventions along those lines, as well as cognitive behavioral therapy, etc.” So, I mean, they did say that.
Lauren: Yeah, they told you it was all in your head, but with the symptom management.
Sarah: Yeah, exactly. Which is, I think, just as common. You don’t have to say, “Ma’am, I think this is a psychological problem, not a physical problem” if all you’re doing is recommending anti-depressants, without talking about any of the physical basis.
Lauren: You also talked a lot about the anti-depressants and also birth control that was constantly offered to you. You were given Band-Aids a lot for these problems, and there was very little searching for the root cause. And it’s only the practitioners who’ve searched for the root cause who really helped you in the end.
Sarah: Yeah. One incident that happened early on … I do feel like this was a turning point for me … I had just met my first WOMI, this woman we call Charlotte in the book, and she was the very first person I’d ever met that was just like me. Her problems were also urinary in nature, and she had all these digestive problems. And she had really managed them by doing a Candida cleanse, which is really just another way of saying an intervention in her gut health. She had done that, and she had encouraged me to do that, and it was the very first time anything even wellness-related had crossed my radar. Because this was 2005, which at the time — it’s hard to remember — but now, wellness is ubiquitous.
Lauren: Yeah, but then it was very woo-woo.
Sarah: Very. I was the only person in my circle that was, in any way, interested in these things. And so this woman was the first person that introduced me to this.
I started reading all these books, and I was like, oh my God. This was the first time I’d had myself described back to me.
Instead of describing myself over and over again to doctors, and being told, “This does not compute; this is not real.” And so my mind was blown. I was like, oh my God, I’ve figured it out. This is definitely a part of what’s going on with me. This explains so much. I was on all those antibiotics, I’ve got Candida overgrowth, etc. And I had gone on that Candida cleanse, and I had really improved. And so then I went to go for a follow-up with a gastroenterologist that I had seen previously. I went back to that doctor who otherwise is a nice enough guy. And I was so excited to talk to him about gut health stuff. I just went in and I was like, “What do you think about all of this? What do you think about diet? Could I be doing this? Could I be doing that?” And he looks at me and he just rolls his eyes, and was, like, “Oh Sarah, diet has nothing to do with irritable bowel syndrome.”
Lauren: This was from a gastro! When I read that, I was, like, oh my God! It made me so mad. Because it’s so ignorant. And you say this in the book … you’re literally talking about the stuff that goes in the bowels not affecting the bowels.
Sarah: It’s insanity. It does not make sense.
Lauren: Good for you for knowing then that it didn’t make sense.
Sarah: Yeah. I mean, I had come in there bright-eyed and bushy-tailed. I was so excited to talk to him about everything I had learned so that we could like have this collaborative conversation about it. And he was, like, “Oh, Sarah, don’t believe everything you read. Diet has nothing to do with IBS.” And to mention, I didn’t just have IBS; my colon didn’t function.
Lauren: It wasn’t IBS: it was something much more extreme.
Sarah: Yeah. That moment, it was just like these two different world views colliding.
That was the first moment that I was, like, something is really, really wrong here, and there is something wrong in the system itself.
And this is not just about me and what’s wrong with me, and that I am just broken and this glitch in the system. There is something that’s really wrong here. That does stick with me as this sort of defining moment because it did set me off on this other course of like … Okay, I’m gonna do the deep research here to learn and figure out everything that I can about this, because it is not going to be handed to me by the physicians that I’m working with. But that was pretty far into it; that was, like, 2008.
Lauren: That was five years in already. We touched on this before, this idea of privilege. Do you think that your circumstances may have been different if you had presented in another way than you are … perhaps, if you’d been male, or if you had been a woman of color. These are two very obvious disparate experiences. But do you think that things would have been different in the story of Sarah Ramey if you had been something other than you are?
Sarah: I’ve thought about this a lot. For sure, I think if there was any other overlay of marginalization on top of my own experience of being a woman, it would be worse. Like if I was a person of color, if I was trans, whatever extra layer … I think it would be worse. But I do think that the big thing, at least in this area … I don’t think in general in the world, the worst thing is to be a woman … but I think in this particular area, it is the being female that is what causes you to be treated so, so badly. Because I’ve done so many interviews with so many people, including lots of people of color and trans people. And it’s definitely, I think, worse. But it’s not what is causing you to be treated badly. If you’re a woman of color, I think you’d probably be treated worse than me for sure. But that’s not the whole reason that you’re being treated badly. I think it’s the being female.
Lauren: Yeah. What if you had been a man and it had been a testicular issue? I wonder if it would have been solved right away?
Sarah: I don’t know. Because there are a lot of men who are also WOMIs, men that have these problems and they are treated not very differently. But I really think that has to do with the fact that they essentially have a woman’s disease, that mostly women have these problems. And so that’s how the framework for thinking about them gets associated with, “Oh, this is an un-serious problem.” And it’s not on purpose. It’s not like, “Well, we don’t like women. And so we’re gonna treat these illnesses poorly, because they predominantly affect women.” It’s all unconscious. But because that unconsciously gets applied to things that women predominantly experience, then the casualties of that are men who also experience a problem that is predominantly affecting women. So that’s my experience, that men who are like me are being treated in a very similar way. But it’s because they’ve got this illness that is being treated the way that it is because it predominantly affects women … if that makes sense.
Lauren: Absolutely, totally makes sense. So can you tell us what’s next for Sarah Ramey? What’s next in in the growth of WOMI advocacy?
Sarah: So right now, this book just came out, and I’m a very introverted person — especially on the Internet. I hate the Internet!
Lauren: Except during COVID times, that’s where it serves us!
Sarah: That’s true. It has been amazing to watch. All the stuff that I really needed when I was sick, in terms of people checking in, being good friends …
Lauren: It’s unbelievable, isn’t it. Let’s have a game night, like it’s no big deal. Why didn’t we do that years ago?
Sarah: I know. I’m actually working on an article about this. That’s like … Listen, I’m not trying to downplay any of the stuff that everybody’s going through right now. But don’t forget this. You have people in your life that are going through everything that you’re going through right now — the isolation, the fear of illness, their job up in smoke, just all of it is exactly what it’s like to be somebody with a chronic illness, where you’re socially isolated. So if you’re an able-bodied person that’s experiencing those things for the first time and it’s freaking you out about how bad it is, do not forget, that once this is over, be sure to continue to support the people in your life who basically have lives that are COVID-19 era behavior. And they need the same things that you need now — all of this social connection, and game night, and all of those things.
So don’t forget the WOMIs when this is over, or just all disability.
Anyway, I’m thinking about it a lot because I thought it was going to be different. You won’t believe this, but I was not anticipating a global pandemic right at the moment of this book coming out!
Lauren: How could we have anticipated it?! But in many ways, it’s been a gift to the disability community because we’re able to be, like, “See?” But it’s also a source of great frustration because it’s, like, well, we’re been asking for these accommodations for the last 20 years.
Sarah: Yeah. So, I’m still actually just trying to figure out how to best be of service. Because I’m somebody that goes deep into the cave for a long period of time to work on something, and then comes out with a book of an album or something like that. I’m not really a content producer.
Lauren: I’m sorry, I thought everyone was required to be a content producer at this point! (laughs)
Sarah: I know! And I see that!
Lauren: Like, my agent asked me to.
Sarah: And so I think about that a lot. Luckily, right now, nobody needs my content!
Lauren: I would totally disagree because I can’t encourage everyone more to check out the book. Because there were so many moments reading the book that I sat there and I was, like, oh, that’s my story! And that I texted friends of mine and said, “You need to read this book because this is your story.” I think that’s very vital.
Sarah: Well, that’s what I mean … I feel great about the book itself and I really hope that it does find the people that are like us. And also the people that love the people like us.
Because the one thing that I really hope for from this book is not so much my own advocacy, but for the book itself to be a mirror that people can feel seen.
I’ve had a bunch of people say to me that they’ve given it to their physician or to their psychiatrist or to their parent.
Lauren: Oh, that is very smart.
Sarah: That makes me feel really good. Because those are actually the people that really need to read it. I think people like us, it can be really helpful to have your experience mirrored back to you. But if you’ve already had that, then maybe not as much. But so many people, it’s invisible to them. They just have no idea. And there is something about storytelling and being brought all the way into it that I think can have an effect of, like, oh shit.
Lauren: This is really happening.
Sarah: This is really happening, and I really am one of those people that thought some of these unkind things of it. So many friends have been, like, “Oh my God, I’m so sorry.”
Lauren: You say yourself that you were one of those people, too. We go through these experiences, because we’re being challenged in our beliefs, and it’s important to be challenged in that way regularly, no matter who you are.
Sarah: That is exactly right, and what I think is so important for physicians … because I do think, psychologically, what’s going on is that there’s this ego fragility syndrome of “If I don’t know what’s going on, then that’s too uncomfortable. And so I have to make it the patient’s psychological problem so that I don’t have to sit with that discomfort.” I really feel like that’s frequently what’s going on. And that just cannot be allowed. That is an emotional skill that you have to grow out of if you’re a physician. You are not allowed to be so emotionally inept that you’re gonna blame something on the patient that is not the patient’s fault. That should be baseline. That just should not be allowed, and that’s not too much to ask. This is a time when we are seeing the very best doctors, and I love doctors. What we’re seeing right now is the reason that we love doctors. But it isn’t an inoculation for not doing some of these other really important things.
Being a hero in one area doesn’t mean that you get to mistreat a patient in another area.
And that’s hard, and I get that.
Lauren: Well, it’s responsible use of power, isn’t it.
Sarah: Exactly. And that’s something that we all need to do. Like you just said, I had to do that. I definitely told my roommate in college who had chronic fatigue syndrome that I would drive her to the therapist, and that I really thought she needed to do that. Granted I was 20, but I still did that. And so I just think the way that we’re treating other people has to be a constant evaluation. And that it’s not something that you’re running away from all the time. If you find something bad, that’s going to dissolve your sense of self and so you just have to constantly run away from it.
Lauren: It’s constant evolution, isn’t it. Being open to the world changing in front of our eyes, which it’s doing right now — much out of the control of all of us. And I think that’s a very important reminder, isn’t it, to take stock and rethink.
Lauren: So, I like to wrap up my interviews with a couple of Top Three lists. I was wondering if you could give us your top three tips … now I know it’s hard to narrow it down because you’ve obviously put a lot of thought into this in the book as well. But top three tips for someone who’s a WOMI, someone who’s in this world of invisible chronic illness, or maybe suspects something is off … what would you recommend to our fellow WOMIs out there?
Sarah: Number one is, to trust yourself. To just agree, right now, that you are going to forge an alliance with yourself — and that’s primary, and everything else is secondary. Because that is going to be tested over and over and over again, not just by physicians. We didn’t talk about this much, but it happens a lot in the wellness world as well where it’s, like, “Maybe you didn’t think positively enough, and that’s why you’re sick.” Or, “You didn’t do my special yoga in Bali.”
Lauren: I’ve talked to some people about that in the past as well … that overwhelming negativity that it must be in your head, that you can’t switch on the positivity, or that you’re not doing the work. I feel like there’s a term for it, like The Pink Problem or something like that. It’s an epidemic of its own sort, and you’re absolutely right.
Sarah: It’s like toxic positivity. Because obviously those things that you’re seeing in that world, they are really useful. It’s very important not to get stuck in victimization or blaming other people or being super, super, super negative all the time. It’s important to develop your resilience and your resourcefulness and not blame things on everybody else.
But that does not mean that you are 100% responsible if you get sick.
Lauren: I think that the bottom line is that no one would choose to go through what we’ve been through.
Lauren: Why would you?
Sarah: Why in the world? And people are, like, “That’s secondary gains.”
Lauren: What gains? I’ve spent $150,000 to feel like I’m halfway decent. Where’s the gain, yeah.
Sarah: Yeah, you tell me. But they will. They’ll be, like, ‘Well, think about all the attention that you’re getting.” You’re like, “I have been locked in a room for five years. I have literally had the opposite of attention. What are you talking about?” But people get into their worldview and their ideology, especially if it becomes associated with how they make money. I think that people are really tied to a lot of these things. If you’re a yoga teacher or positivity coach or whatever, it has to be; it has to be because that’s what you’re selling to people. There are a lot of problems there. So I think my number one recommendation is to trust that the way that you’re feeling, especially physically in your body … that that is real. And that whatever anyone says to you, especially if they’re saying, “No, that’s not happening. There’s no science to explain why that is.” That just means that the science has not been produced yet to explain what you are experiencing; it does not mean that what you’re experiencing is not real. And number two … I talk a lot in the book about functional medicine. And the reason for that is because I think of it as a filter for the wild and woolly world of alternative medicine. It’s like feeding all of that through an evidence-based filter that’s sorting out the wheat from the chaff, so to speak.
Lauren: And some of the stuff that is actually woo-woo, because there is some actual woo-woo stuff.
Sarah: That’s what I mean. Because what happens … and we talked about this in the book a lot … is, there does come a point in conventional medicine where you’re, like, wait a second, these people hate me. I am not being helped.
Lauren: There comes a point? God, that happened to you in the first five minutes!
Sarah: That’s true, but I didn’t realize it at the time.
Lauren: That’s the great irony, isn’t it.
Sarah: Yeah. But there comes a point where you realize it, and then you defect, essentially, into alternative medicine. But the problem is that alternative medicine is not a discipline. It’s not a singular thing. It’s just a big collection of everything that is alternative to conventional medicine. And so there is a lot of nonsense out there! Or, I should say, a lot of stuff that maybe works for some people, but doesn’t work for everybody. That’s probably the most generous way to put it. And so what functional medicine is doing is really taking the things that (a) where there’s been some scientific study of these things, to say, well, it really does look like gut interventions make a big difference in dealing with X, Y and Z problem. Or food as medicine, and all these things. So it’s a way of, I think, making sure that you don’t just get stuck in an eddy of flushing all of your money down the toilet, doing a million different alternative things because you don’t know what else to do.
I think functional medicine is the fastest way to try some of the most effective interventions for WOMI-type problems.
That said, there are some real problems. It is not covered by insurance yet. And so it’s really expensive. That’s not functional medicine’s fault. Conventional medicine would be extremely expensive if not covered by insurance. It’s just the insurance part. I think that’s gonna change, actually in this crisis.
Lauren: Agreed. We’re seeing how it’s broken. We’re seeing just how it’s broken.
Sarah: Yeah, and it’s clear that our mortality rate is probably going to be a lot higher because you’re much more susceptible if your underlying health is poorer. Wellness has already moved so firmly into the mainstream that I just think there’s going to be pressure for people to take matters into their own hands. And then that’s going to put pressure on the insurance companies to cover the things that can actually prevent people from becoming very expensive and sick all the time. I think it’s in their best interest. It’s like one of these rare instances where Goliath-insurance companies and a David-regular person … our interests are actually aligned. It’s very unusual. But right now it is. It’s so expensive for everyone in the United States to be chronically sick for them, for insurance companies, that they have to pay all those bills.
Lauren: And we’ve been so focused on the acute care, as you’ve said, rather than intervention.
Sarah: Exactly. It’s clearly not for all problems, but you can really reverse a lot of the worst of some of these chronic illness issues with things like functional medicine. Anyway, I hope that it gets covered by insurance, but it’s not right now. And so it’s pretty expensive. So, what I would always just encourage anybody to do is to start by learning about it, because that, in and of itself, is a whole learning experience. To read a book by Mark Hyman or Chris Kresser or Amy Myers or Terry Wahls … there’s a bunch of good ones … and to just learn about that way of thinking about health, I think, is a good place to start before you spend any of your hard-earned money. And then the third thing I would say actually now, is to participate at the levels that you’re able to in all the things that we’re all doing right now, because of COVID-19 — in terms of social connection. But to be explicit with the people around you that you really would like this to be an ongoing thing for the future.
Because it’s in the same ways that it’s healing to them is a way that I think people can actually finally understand.
Just like to say, “I’m so glad that we’re all doing this. This is something I really hope that we can do moving forward even after this crisis.” Because I did some of that when I was sick, and it helped me so much. But I didn’t do nearly as much as I’m doing right now. And I know that it would have meant the world to me to have a regular game night. I mean, I know it’s all different when you’re really, really, really sick.
Lauren: Even just a regular chat.
Sarah: A regular chat. Or like Netflix party. We did a Netflix party. That didn’t exist as a function when I was sick, but we would all start with pressing PLAY at the same time and have a chat open on Facebook. Now you can do that in Netflix on this thing called Netflix Party, and it’s just a way to connect to people in a situation where you’re really isolated. And that isolation absolutely compounds the psychological suffering, but also the physical suffering, I think, of these problems. So whatever you can do to build up those social connections in your life, even virtually, because it is gonna make you feel a little dumb … it always did for me.
Lauren: I’m tech phobic, so I get it! I’m catching up to the technology.
Sarah: I actually felt bad that I was asking people to help me, which is so sad.
Lauren: But that’s hard.
Sarah: It’s a real thing. It is very hard to ask people to take time out of their lives to do something special for you, especially if you’ve got something that’s not taken seriously. It’s extra hard to ask for that. But it is so important that you overcome that and you do ask for that help. And then you make it into a thing that is scheduled and a regular thing; not something you have to ask for over and over and over again. Your Thursday nights with your best friends, or whatever, or your first Sunday of the month with whoever.
Lauren: Because it gives you something to look forward to as well, which enables you to cultivate more positivity in general, right. That you’ve got something to pull you out of the hole if necessary.
Sarah: Totally, totally. And I would really encourage you to set up as many of those things as possible with different people.
And it’s good for those people, too. I think that’s something important to remember.
Lauren: I love that. So the last Top Three list is … now, we know that you have experimented with numerous lifestyle changes throughout this experience of diagnosis and treatment and symptom management. I’m wondering if you can give us Top Three things in your life that give you unbridled joy, that you’re totally unwilling to compromise on. So this can be a guilty pleasure, a secret indulgence, a comfort activity like doing FaceTime with your friends and stuff. What would your top three things be that are your WOMI Happy List?
Sarah: So, my first one is definitely my cat!
Lauren: Mathilde! I can see her sleeping in the background there.
Sarah: I’m a big fan if you’re able to have a pet, because I think it really does buffer the extreme isolation if you are really isolated like I was. I love my cat!
Lauren: I’m the same. I am so with you! I cannot recommend cats more. Look, dogs are great, they’ll get you out. But when you’re someone who deals with fatigue, and you don’t have as much energy to give, cats are amazing because they’re around, they will love on you, and all you have to do is feed them and scoop some poop.
Sarah: Yeah, it’s not too much. And it really does make a big difference. I’ve had times where I had to give my cat to my mom for a while because I wasn’t able to take care of her. And I was worse. I was so much sadder during those times. So, if you can, adopt a cat. For me, another big one is music.
That’s just always been … that’s just saved my life in a number of ways, making music, and making sure I don’t let that go by the wayside too much.
Because it’s easy for me actually, to do that. Some people, some artists, they just create, create, create. I’m not that way; I really have to be intentional about it. But if I do that, it makes my life just so much richer and I’m just so much happier. This is such a broad category, it’s the same as the last thing … friends. My close friends just give me such joy. I think this happens with a lot of people … illness does start to cut away the people in your life that are not great for you.
Lauren: That’s so true.
Sarah: I was thinking about that recently. I’m grateful for that, and so grateful for the people that have really stood by me this whole time. Those people bring me an incredible amount of joy. It’s kind of the same thing … the more intentional I am, connecting with those people, setting up regular things with them, writing letters to them … that just really does make my life feel like a lot fuller, better.
Lauren: And more connected. Well, that’s absolutely beautiful. Now, as we round things up, can you tell everyone who’s tuning in right now where they can find … not only you and your book, but also your music if they want to listen?
Sarah: My website is SarahMarieRamey.com.
Lauren: And we’ll link to this on the website as well.
Sarah: The book is called The Lady’s Handbook For Her Mysterious Illness, and it’s out from Doubleday. You can get it on Amazon. I would recommend going to a site called IndieBound and that will help you buy it from an independent bookseller. Because, right now, there are so many booksellers that are genuinely in a really bad way, and so I would do that, if you can. If you can’t afford it, you can get it at the library. And it’s also on audiobook, if you have Audible or something like that.
Lauren: Did you read the audio book, too?
Sarah: I read the beginning of the audio book and the end. I tried to do it, and it’s so hard.
Lauren: Yes, it was probably re-living a lot of it.
Sarah: Emotionally, and just physically … they warned me. They were, like, “You’re not going to be able to do it.” So, I did the beginning, and then I went home and I wrote to them, and I was, like, “I’m not gonna be able to do it.” So they sent me a bunch of names of people that could read it. And I listened and I didn’t really like any of them. And so I went and listened to about 100 different readers, and I found this one woman that I really liked. They asked her, she did it, and once she was done recording, I got this long letter from her. She’s a WOMI!
Lauren: There we go!
Sarah: She went into the studio and was reading it, and she was, like, what the … ?
Lauren: It’s like reading your own story back to you!
Sarah: Yes, she was, like, “This is like reading my journal out loud in a recording booth.” She had wanted to write a book, but it’s hard to write a book.
Lauren: That’s really wonderful that happened.
Sarah: I know! I was, like, of course she’s a WOMI!
Lauren: Well, also, if you throw a stone at this point, you’re more likely to hit a WOMI than not. That’s just the data we have. That’s what we know.
Sarah: Yes! Anyway, those are all the ways you can find the book. And then for music, my music name is Wolf Larsen, which was my grandfather’s name. You can Google that or go to WolfLarsenMusic.com.
Lauren: Well, Sarah, it’s been such an absolute honor speaking to you today. I’m really glad we were able to connect, and I’m just really pleased to be able to give you an additional platform to talk about your story. Because it’s so important that we have WOMIs like you sharing stories. So thank you so much for being on the show today.
Sarah: Oh, thank you so much. It was such a pleasure talking to you.