Transcript

Lauren: All right, guys, thank you so much for joining us. I am here today with Rachel Otis, whose pronouns are she and they. Rachel is a somatic therapist who lives with Crohn's disease, and specializes in treating patients who also live with chronic illness. She's also very intersectional, and we're going to get into that as we discuss her health history. So Rachel, thank you so much for joining us.

Rachel: Thank you so much for having me. As we were saying, It's been a long time coming, so I'm super excited. I saw another Spoonie sister of mine on your podcast a while ago, and I was, like, okay, I need to look into this!

Lauren: Who was it?

Rachel: Devri.

Lauren: Oh my gosh. Oh, I love Devri! She’s amazing. 

Rachel: We know each other through the Internet. It's a great example of, I think, the positive power of social media that people with chronic illness are being able to find each other and connect with one another.

Lauren: So true. It's such a pleasure to have you on, and as so many of our listeners know, we start at the very beginning of your health history on this show. So I would love for you to tell us how you first realized that you were sick, how you first got that Crohn’s diagnosis, and what steps you've since taken to take control over your health.

Rachel: Yeah, super fun.

Lauren: Yeah, real jackpot there! Congrats! This is the time when we throw a party about it.

Rachel: Yeah. I took a little mental inventory, and was, like … I've had it for almost 20 years. I was diagnosed when I was 14, which means I was 14 when I started feeling symptoms. Essentially, for me, there were experiences of intense pain in my lower abdomen.

The way that I can best describe it is … I would always describe it, especially as a teenager … kind of like someone just sticking a knife in your gut and then twisting it around.

Lauren: That’s not an uncommon description that we hear on the show.

Rachel: And side note, fun fact about Crohn’s, just in case no one's mentioned this yet … the director or creator of that movie Alien …

Lauren: Ridley Scott?

Rachel: Wait, the writer of the movie, I want to say … he wrote that scene … I've never seen it because I can't do that.

Lauren: I can't either. It's too scary for me! 

Rachel: It’s a famous scene where literally an alien comes out of someone's abdomen or whatever.

Lauren: Yes, that sounds familiar!

Rachel: I read that he has Crohn’s, and he metaphorically wrote that as a way to express that pain. And I was, like, oh, my God, yes. An alien just coming right out of you!

Lauren: Well, because I think so many of us feel like, when we first have this onset of chronic illness, it feels like your body has been invaded by some kind of otherworldly force, like an alien! Because it becomes alien to us, too. We're used to being healthy-bodied, able-bodied, and then suddenly, our health is taken from us. It's a very out-of-body, strange experience.

Rachel: Yeah, totally.

Lauren: That’s a very cool fact!

Rachel: Fun fact. When I heard it, I thought, I can relate to this. It was just like a lot of time having to go to the bathroom and all the non-fun things that you don't want to talk about when you're 14. Mostly for me, I wasn't absorbing anything for, I guess, quite a period of time. Nothing's getting absorbed. Everything's just coming right through your system.

Lauren: So you're totally malnourished.

Rachel: Yeah. I had a lot of shame and embarrassment. I didn’t tell anyone for maybe … at least a month. But then there was a point in the symptoms where I started losing blood when I was going to the bathroom. And it was a lot. So I was, like … okay, bleeding internally. That's when I had to figure out how to find a doctor and tell my mom, and all these things.

So, it was like a very long process, though, because as anyone with Crohn's might tell you, there could be 10 of us in a room and we can all have it so differently from one another.

I think that's why it's hard for other people to understand it, aside from the fact that it's mostly invisible. Aside from when they put you on things like prednisone, and then you get like, a moon face.

Lauren: Yes, there's that, isn't there?

Rachel: When you're a teenager. But as we were saying about invading your body and that kind of thing, for me, also concurrently, I went from being a child who was, according to medical terms that I now don't believe in, “underweight” for my age. And maybe around 8 is when I started going on the other side of that spectrum. I also think there was a lot of dysmorphia around it, because it gets really medicalized. And looking back, I’m, like, whoa…

Lauren: A lot of very damaging language in there for sure.

Rachel: Yeah. So at the same time, I already had felt betrayed by my body for a number of years, not wanting to be seen as fat, or associated with that word at all. Growing up in a very small town, going to Catholic school and having uniforms … I was about to swear, I don't know if that’s allowed on this podcast!

Lauren: Please! It’s more than allowed. It's actually my favorite when people do, so I say go for it!

Rachel: A fucking dressing code. So it was a very small kind of place. And looking back, I can see how truly I had internalized the fat phobia, because most people who do get Crohn’s that severely … again with the malnourishment, that would mean that your body is getting emaciated. Most people lose a lot of weight and get really, really thin and malnourished. And I remember being really angry at 14 … like, now I have this disease in my stomach, can't even eat anything. I was drinking Ensures for a period of time, and I still wasn't losing a drastic amount of weight. And that pissed me off, I think more than anything. So that's really how the journey began. Ultimately, I had a very negative experience with a doctor. She, I will never forget, sat me down with my parents after doing the most, especially at that age … it just felt very invasive. Having someone even do a rectal exam.

Lauren: Yeah, that kind of kind of thing … unless you're given proper preparation, and a heart-centered discussion about what this is going to look and feel like … that's a really rough thing to go through. Especially so young.

Rachel: Yeah, and then the colonoscopy, and drinking shit and barium, doing MRIs with a contrast where they give you … 

Lauren: The radioactive egg?

Rachel: Yeah. Through an IV, essentially, was the one that I've done so that then they can take pictures of your intestines. All the fun things. And then only to have this woman, female doctor … and I say that with a little more surprise, because I hold out a little bit more hope. But I know now that the patriarchy consumes all genders.

Lauren: Yes. Thank you for noting that.

Rachel: Yeah.

And essentially she showed me this picture and was, like, “Yours is the angriest looking colon I've ever seen." 

Lauren: Like, sorry?!

Rachel: Yeah. Literally after that, I never saw her again. She left the practice; something happened. I still was going untreated. So my mom … I know one of your later questions is about advocates … one of my first advocates was my mom because I was still a youth. And so she got me to be able to go to Children's Hospital in Boston, Massachusetts, because I grew up not too far away. That was really important. And I pretty much went to Children's Hospital to my beloved first doctor, shout out to Dr. Fishman! She's still there. For being that more heart-centered, compassionate person, but also I got to go there until I graduated college. 

Lauren: Amazing. 

Rachel: They have the best infusion suites, because ultimately, my journey has ever since then brought me to doing Remicade infusions. Nothing else was working, medication-wise. So pretty much not too long after, I started getting infusions every eight weeks. Now it’s almost 20 years later. So that's a pretty long time.

Lauren: Yeah, that’s a very long time. 

Rachel: When you're in the children's bubble, you don't have to think about your future so much.

Lauren: Yeah. And that's rough, too, that transition from pediatric to adult care. Noone gives you a guide with adult care from pediatric care. You get mollycoddled a bit, in a good way; you get sort of held, they hold space for you. Whereas that doesn't really happen with adult care, does it.

Rachel: Honestly, I just think it should be the standard of care, across the board, no matter what the hell age you are. Because let's just say what it is … I have never found a place that I've loved more than Children's Hospital. I've never had as good infusion experiences. I have a giant hematoma on my arm right now from my last infusion. At this point they use a full-on ultrasound. But it's so problematic. So I would say it's a really rough transition. It's not a good one. And it's definitely one part of the medical system that I hope gets to shift over time.

Lauren: We're going to talk more about the medical system in a bit. But let's pop back to this advocacy discussion. Because I know that you mentioned that your mom was your advocate when you were a kid. How did that impact your relationship with her? Is that something that changed the power dynamic between you two? Did it bring you closer at all?

Rachel: I’m also an only child …

Lauren: High 5, me too!

Rachel: Oh my god, yes!

Lauren: We always manage to find each other!

Rachel: And my mom has a really big family. I'm an only child, but I'm also the oldest of 30 cousins. It’s an interesting dynamic. So I was always just very good, is how I want to describe myself. And I think part of that, because I hadn’t gotten to grow into anything that I am now, also helped me to be super-close with my mom. And so yeah, we were very close.

She came to all my infusions with me. And, honestly, is like a fierce-ass insurance system warrior.

Lauren: This often happens with the parents, because they've got to fight for it first.

Rachel: Right. So a lot of what she did, I think initially, I was not seeing. I was just really sick, and I was just trying to deal with that, and she was dealing with that — and all the insurance stuff. Let me just name that at this point in 2020, a Remicade infusion costs $70,000 — one Remicade infusion.

Lauren: It is unbelievable, the cost of drugs. This is the problem with for-profit, corporate interest in the medical system in pharmaceuticals.

Rachel: Yeah. But again, places like Children's Hospital have a lot of donations, funds. I don't know, she was just really good at navigating all that. Just so much so. I just remember that when I was in high school … a really traumatic memory … another boy was on the verge of dying. And no one could figure out what he had. He was in Children's Hospital at that point. And I was going to my infusion, so I told my school I'd bring a care package. And I brought it, and literally he said, “I finally just got diagnosed. And I found out I have Crohn's disease.” I was just like …! I think my mom did a lot even just to help his mom understand the things that they won't tell or teach you.

Lauren: Well, and that's the thing too, there's no primer for navigating the healthcare system. And it's so complex because of all of the red tape that's in the system right now.

Rachel: So it's a thing. But I would say, I mean, my ultimate advocate has to be myself.

Lauren: Well, that's what I was going to ask next. How has that impacted your relationship with yourself as well? Because you've been on this journey of self-acceptance, from it sounds like 8 years old. And how has that changed the way you see yourself and the way you move through the world?

Rachel: Greatly! How do I even put that into words?

Lauren: Would you say positively? Is it a positive experience to discover yourself as your own advocate as an adult? Or is it also an additional stress that no one should ever have to go through?

Rachel: I am a therapist, so it’s both/and! I would say, I'm still now, at this point 20 years later, it was only a few years ago that my mom handed over the insurance baton. And that part of it alone — somebody should pay us all to do the work of trying to navigate that shit and being sick. So that's an added stress.

But I think ultimately advocating for yourself connects me to a sense of resiliency that I have, that I witnessed from my mom.

But then I also witnessed with my mom is that there's so much hyper vigilance and survival mode, that I also want to be the generation to be able to be in thrive-al mode. Also having chronic anxiety alongside all these things … it’s probably important to name … because I’ve had that for as long as I can remember, as a small child. And not to get too much into trans-generational things … but I do like to look at, again, Crohn's as a both/and … there's my genetic history and some of the things they know about — like, more populations of Jewish people are affected by Crohn's disease, for example. But then, also for me, understanding that, ultimately, anxiety manifests in my gut. Everybody: a shout-out to just Googling “neuro gastroenterology”. It essentially says, Our second brain is in our gut. That's why people say they feel butterflies in their stomach when they're nervous, or have different sensations. But again, what does it mean to have that, and also have Crohn's? Or, what does it mean to be a young person and really feel like you hate your body and hate your stomach and want to cut it off! And then ultimately have this painful cut-off inside your stomach? So it's a lot of things. I would say, it definitely helps me to be an advocate for not just myself, but for other people. I don't know how other people do it, but pretty much shortly after with Crohn’s, as a 14-year-old girl, I was, like, I want to work with people. Because the missing gap is therapy. And that’s what I bring in. Even in a children's hospital, a psychiatrist is just not going to cut it for what you need for the emotional component of being a young child, and being so different from most of what everyone else gets to worry about or not worry about.

Lauren: Well, I mean, it's such a fair point. And this comes up so much in the conversations we have on the show — that mental health is such a massive component of chronic illness. And that if you don't get diagnosed with the chronic illness first, you will have some kind of mental health reaction to a diagnosis that's going to change your life. And so this idea of mental health access being a part of any kind of healthcare, and its importance in these situations. And it's never a part of it in our system, is it. Or if it is, it's not necessarily well handled.

Rachel: No. Short answer, no. They don't make it easy to navigate. And it also makes me think of how much privilege I still hold in my body, the privilege to even have a mom, to have a mom who knew how to navigate this system. To, I guess, be seen as white — which is something we touched on briefly before. I also identify as an indigenous woman, being raised with my Micmac tribe heritage practices and spirituality. 

Lauren: And your connection to that, and the way that you present to a doctor at Children's Hospital, for example, are two separate things.

Rachel: Interestingly enough, yes. I still want to meet with my doctor and have a follow-up. I want to do a ‘let's reflect on that experience.’ Because as much as I loved her, there was also this thread, again, of the medical world classifying me as morbidly obese. Looking back, not at all what I would consider whatsoever. I had a smaller body … I don't know, maybe like a size 18, or sometimes 16.

Lauren: And you were called morbidly obese at that size?

Rachel: Right. So at the same time that they're trying to “heal” Crohn’s, they're also putting me in what they said was a nutrition program. Looking back, I recently found this food journal. It was so fucked-up. I wish at that point in history and time, someone had also just talked about food in a different way, like … hey, let's look at like how gluten might affect you, or how dairy …

Lauren: Or more about how it makes you feel when you eat it. Like, your emotional and physical reaction, rather than ‘this makes you fat,’ or ‘that makes you thin.’ Right?

Rachel: Right. All of what they were doing was just restricting.

Lauren: Really like a disordered relationship to eating and food.

Rachel: I really think so. That’s something that only just now I’m putting all the pieces together with. But definitely encouraging that. And then I think what the most fucked-up part is, again, my disease was in my stomach. And it's one that, if you look at it holistically, I think people forget … and not to be crass … but you can only get so thin. You can only lose so much weight … and anyone who's been really sick will know that … before your organs shut down, and your body cannot live anymore. Society focuses way more on the opposite. And that's gonna take so much more than the anorexia and bulimia and orthorexia — all the things we're breeding right now. I went to an herbalist; she was fat phobic and still wanted me to lose weight. And I never went back to her. The one little seed of magic that I took was that she was, like, “There's more for me to be able to work with when what your body's telling me is like, it did everything it could to survive.” So, obviously, if you can't hold in nutrients, perhaps your body goes into thinking it's going to starve mode, and maybe as a survival protection, like having weight on my body, also keeps me alive. 

Lauren: Absolutely. I think everybody's different that way — every body, and everybody, has a different reaction to stimulus and the way we hold weight or let go of it, and everyone's individual in that sense. If only we could look at bodies from an individual point-of-view, rather than a standard point-of-view.

Rachel: Totally.

I ended up writing my graduate school thesis on unlearning fatphobia and medical bias.

Lauren: Oh, good, because we're gonna get into that even more! I want to know what a typical day is looking like for you now, as you're 20 years into treatment. You seem pretty stable with the course of treatment. How are you balancing the demands of work and life as you're managing potential symptoms and potential triggers of symptoms?

Rachel: I’ve built my entire life to be sustainable for my Crohn’s disease. That’s something that took me many, many, many years to be okay with … not only to be okay with, but be like, oh, yeah, that's the only way it can be. People with chronic illness will agree. We don't have a choice whether or not we “self care” or slow down or build these things into our life, it has to be there. So after surviving graduate school, not being given the opportunity to thrive whatsoever …

Lauren: Well, let's touch on that really quickly. Because this comes up so much in the show, too, that when we go to college or graduate school, either that's when we get sick, or that's also a time that makes it very difficult for us to thrive. Either because of lack of access to appropriate medical care, or because we're taught that it's okay to run ourselves into the ground, to make ourselves overtired, and do all-nighters.

Rachel: Yeah, I don't know how I did that in undergrad. 

Lauren: Me neither! 

Rachel: I pretty much feel like I did thrive in undergrad, despite having to work so hard to get them to understand what my accommodations were that I needed. However, graduate school, that's a whole other show … but pretty hellacious. I could see I was maybe the only one with chronic illness. There were only two people with bigger or fat bodies. Only one Black person in my cohort, very few people of color, and they all got pushed out of my program for being non … they weren't English as their first language.

Lauren: Wow, that's really bad.

Rachel: Rather than seeing that as the ultimate gift and amazingness, especially for somatic therapy, which is the mind and body connection. That didn't happen. So yeah, I guess for me, grad school showed me that that was not sustainable. Because I did then work in a clinic for two years in the heart of San Francisco. I was living in Oakland, I was on the subway, I was living this mask life way before any of this pandemic. And getting looked at, like, what are you doing? It was very traumatizing. I was very sick throughout grad school. What I want to say is, it showed me that I could not be a therapist who works in the center of a city. Even though I had an amazing opportunity after school. I worked really hard to become the first person in my school, maybe in the state, the first somatic therapist to go for double licensure in the therapy system. But then again, through that process, that's how I ultimately divested from licensure.

Because I realized the system was not made to include therapists who have disabilities or illnesses.

And I don't know how we could ever afford or survive the dynamics of what they're setting up. I already have $200,000 of student debt, I already worked for two years for free. My clients would hand me that money, I would take that money and I'd hand it back to the clinic which was funded by federal government student loan money.

Lauren: Wow, vicious cycle. 

Rachel: A vicious cycle. So now my life is one where I've always, since I opened my practice just about two years ago, always worked with clients virtually. And my clients are all over the world. So I'm not bound by the laws of state by state. And then additionally, it's important for me to work on a sliding scale. Because another thing we don't talk about a lot is how people with chronic illness have disproportionate bills to pay.

Lauren: Yeah, disproportionate expenses.

Rachel: Right. And then also often can't work in the same capacity as this American 9-to-5 intense hamster wheel.

Lauren: It’s more like 9 to 9 at this point, isn't it, the expectation is. And you can't be good at one thing; you have to be good at several things.

Rachel: You used to have to only be good at one thing. I know that some of us who graduated in 2010, just after everything went boom and our economy … it was a rough time. But I also see people my age … I jokingly call myself an elder millennial.

Lauren: As do I! Did you get that from Iliza Shlesinger, too?

Rachel: No!!

Lauren: She has a whole comedy special called Elder Millennial.

Rachel: No!! I’m excited, but I also really thought that was something I made up in a session with a client!

Lauren: To be fair, you definitely made it up yourself. We don't know who made it up first. But the good news is, you're not alone. Because I also think of myself as an elder millennial.

Rachel: Okay, I totally need to look this up. 

Lauren: Yeah, it's on Netflix. 

Rachel: I was literally like … you're an elder millennial if you're excited that scrunchies are back in. Also, if you’re enraged at the state of the world, then you're probably an elder millennial!

Lauren: If you were raised to think that the food pyramid was one way, and you've learned that it's upside down … also an elder millennial.

Rachel: Oh my God, if you've learned that the melting pot is just cultural appropriation!

Lauren: Yes, absolutely. So, so true. So, have you been in a situation … I mean, we're talking about invisible illness here. Fat phobia aside, gender and race discrimination aside, which we will get into in a sec … have you ever been in a position where you have been forced to justify the existence of your illness to people who couldn't see it, and therefore didn't understand it? She’s shaking her head ‘yes’. Hit us with some anecdotes.

Rachel: Not on a daily basis. I mean, for sure, on a daily basis when I lived in the Bay Area. I want to throw out that I did not experience the traditional positive stereotypes of that area; I experienced a lot of negative things, just even being a queer woman.

But then also with invisible illness, it can't really be separated from my fatness.

Because something as simple as me needing the disability seat on the BART, on the subway, equated to me having to navigate how many men were manspreading, and then how many of them might have an invisible illness? I would say one out of 10.

Lauren: I would also say that very few of them have an invisible illness that makes their balls so big they need to spread their legs that wide!

Rachel: That’s a whole separate thing. I'm talking about actually manspreading in the disability seats, in the special seats … where you’re, like, what's actually happening? I actually, literally got into an argument one time with a man who wouldn't give up a seat for a woman who was, like, eight months pregnant.

Lauren: Oh, that's really bad form.

Rachel: Yeah, I guess it doesn't have to even be invisible. There was one time I lost consciousness on the subway, and I literally had to crawl out at the next stop.

Lauren: No one helped you? 

Rachel: Thousands of people at the Market Street stop on the BART, arguably one of the most populated ones. And not one person said one word. That sums up my experience there. But I will take it all the way from the Bay Area, where they claim to be very conscious about a lot of things and in some ways are … and here, I now live in Maine. Just thinking about some of the ways I’ve had to “prove myself” or, when I really feel like I was being discriminated against. It's been very intersectional with what is visible or hyper visible about me, which is the size of my body, which this society says is not okay. And so to be honest, it took me a long time to advocate to get a handicap spot at the beach. To explain that the beach can't be exclusive to able-bodied people. It often takes a lot for people to understand why I even have a handicap placard. Shout out to fellow Crohn’s people who have ever had a bathroom emergency, or joint pain. And again, no one told me I could ever get this. If I had this when I lived in the Bay Area, so much stress and pain would have been relieved. But figured it out now that I'm back. And then once they finally, on the basis of me being, like, “Look up the Americans with Disabilities Act”… this is illegal essentially … there’s a law. You have to have handicapped parking. Three times now, I’ve experienced people with non-handicap placards and non-handicaps parking in the spot.

Lauren: Oh my God, it’s so unbelievable.

Rachel: Oh, are you ready – because you're not gonna be ready for this part … all three times they were near their cars, or in them, or whatever. So I pulled up behind, and I start with my therapist voice, which is, like, “Hi! Would you be able to move so that I, a person with a handicap placard, could use the spot?”

Lauren: Really very reasonable.

Rachel: I try to therapy it out. I kid you not. All three times, three times, all three people that were male-identified people, came back so ferociously with almost the exact same sentiment: “Wow. Are you sure you're disabled? Or are you just fat?”

Lauren (gasps)

Rachel: ...

All three times. One started with, “Maybe you're mentally disabled? Or maybe if you lost weight.”

One person said, as they were yelling things at me … because let me tell you, then my Bay Area Rachel comes out. I just go to the next level of, like, oh, wait, you thought you were gonna do this to me. But you're not. I won't pull out that Rachel on the podcast, which is pretty fierce!

Lauren: But in a situation like that, my fear is always … what if this person has a gun? Because this is the country we live in.

Rachel: Yeah, I couldn't live my life like that. I did feel that way more when I lived in the Bay Area because it was very, very violent and men would try to physically harm my partner all the time, just for us being queer and in public together. So I felt that there was a barrier there. One of the men definitely had like a veteraned-out, huge truck with American flags. I guess for me, I just can't … there’s something within me that cannot allow that.

Lauren: Good for you.

Rachel: Yeah, it’s good, but it can be dangerous. 

Lauren: Well, it can be dangerous only because of this country. I mean, if you were in the UK, it would be a totally different story.

Rachel: Right. So it's a thing. But are you going to shoot me over this? And then that's gonna become a whole other thing. I don’t let that fear … I think it's my Micmac, some of my Jewish heritage. My grandfather was a defense attorney. He really just stood up for the marginalized folks in that era who were getting really wronged. So I think there's just something in me, too. I would say I sometimes go out of my window of tolerance … is what I might say as a therapist! But what I thought was interesting is, someone else yelled to me, “You just need to get a job.” There’s an assumption that people with handicaps, or disabilities, or just like a handicap placard, I guess is what I want to say … there’s all these assumptions that get made, because they can't see me in a wheelchair. And then the times that I have had to be in a wheelchair — when I have traveled, I have a very specific protocol I follow. Over the few years, I've realized I can access wheelchair assistance. I don't need to be in excruciating pain with the two hours that I’m on the security line. I don't even need to be in line for two hours. And people still look at me a certain way. And I don't think anyone would ever look at me that way if I was thin. So, again, there's the invisibility of my illness mixed with the hyper-visibility of my body size. It’s just always gonna be both.

Lauren: Yes … and also. Those things can exist simultaneously. Well, let’s talk about those parts of your identity within the healthcare system as well. Because I'm wondering about your experience in the healthcare system of prejudice and/or privilege, because of the way you present. So, you present as someone who probably appears to be white, right, but obviously, there's much more to that story. And you are a fat woman, and you’re going into these appointments with various clinicians, practitioners. Do you think some of your experiences might have been different if you presented differently — if you were thin, if you were male? And also, I know you mentioned before we hit ‘Record’ that sometimes your partner, who's Black, comes with you to appointments as well, and how that's also been a force for change in your interactions. So I'm interested to know, what has that experience looked like for you in terms of what's visible and what's not in the healthcare system? It's a very big question. So please take your time.

Rachel: It’s been so varied. It’s truly evolved. As soon as I came into my queer identity, I noticed just how that can be different navigating the adult medical world space and being chronically ill, and not always feeling comfortable or not knowing how open doctors are. Because then things come up. I was on a medication that essentially would kill a fetus. Not to be harsh, but …

Lauren: No, I mean, a number of medications, you’re not supposed to get pregnant on them because they can cause issues and complications.

Rachel: So that became like a whole thing I had to start getting comfortable around. When they were, like, “Okay, well, you know, you can’t get pregnant." And I'm like, “No, but really no.”

Lauren: Not very possible.

Rachel: Honestly, I would say my base level of privilege is just the fact that I can access insurance. And that I had a mom who was educated and being able to do so. Education is a privilege, all these things are privileges. I had good access to good health care; Children's Hospital in Boston happens to be the number one children's hospital in the world. Which is both amazing and shows the in-depth of fat phobia on that level. So, access to all these things. But then my body size just immediately … depending on the fat phobia of the doctor … being a barrier to that. So I've had my same nurse practitioner, general doctor, since I was 13 actually. Even when I lived in California, I would come home for physicals, and things like that. Because she is such a strong advocate and it's so amazing to have found her. But then navigating adult GI doctors has been really problematic. More recently, I tried to find a new doctor out here. And the first one that I met, he didn't know a thing about me or my history. He hadn't even gotten my chart yet, or anything.

And one of his opening discussions was talking about how dangerous it would be for someone with Crohn's … essentially suggesting I wouldn't want to get weight loss surgery. And I was, like, excuse me?

I’m definitely not even in the range, in my opinion.

Lauren: But also, unless you’re going in to talk about weight loss surgery, why is that even a topic of conversation?

Rachel: I was just blown away, because you have to imagine that would be a doctor who knows that my disease is in my intestines being okay with a surgery that goes right in that part of your body. That would never be okay.

Lauren: It’s entirely inappropriate.

Rachel: Yeah, what I say to everyone is, that's when that self-advocacy kicks in. For my clients, I offer a service … I work with so many people are so afraid to go to the doctor. I understand why. And I’m, like, “Put me in your pocket. You can have me on speed dial, I can be your patient advocate.” I also do a lot of patient advocacy work. And in that moment, I informed him what my beliefs were. And also whipped out some scientific facts. I was pretty much, I'm not going to work with this dude. So he was, like, “Let's schedule this colonoscopy.” I'm like, you think I'm gonna let you go up my butt?? Are you kidding me?

Lauren: I can barely have a conversation with you. Why would I give you an invitation to my asshole? (laughs)

Rachel: (laughs) Oh, my God. First, I need to turn that into a T-shirt!

Lauren: You have my permission! (laughs)

Rachel: Oh, my God. Yes, literally. And so, I try to empower people to find the right doctor for you. Find a combination of people. 

Lauren: And that can be particularly fraught as well, because we're dealing with a disease that affects you in what might be considered an outwardly taboo way, in that it's a bathroom disease. But it's also about getting past that and understanding that this is your human experience, and it's entirely valid, isn't it.

Rachel: Right, totally. I was just thinking when you said that, when I was 14, when I got diagnosed, I always felt like, why couldn't I have just gotten a disease that was in my arm? Or, where people could understand. Because trying to explain that to teenagers, I just didn't tell anyone for years. I lived as an able-bodied person, like varsity tennis … I don't even know how I was doing what I was doing. I was secretly getting sick in the bathroom. It's all there. It's all connected when I think about it and reflect on it. So the self-advocacy part is important. It's like a muscle to be flexed over time. And also, it doesn't mean that it's fair that we have to do it. But if we value our own lives, unfortunately, the way the system is set up not to truly value them, we have to be able to side with our bodies over anyone and anything else, essentially.

Lauren: Absolutely. And then what about these experiences when you have gone into appointments with an advocate, when you've brought your partner with you? How's that all played out?

Rachel: Those were the most disastrous experiences, those are. There's one that like stands out that just happened in the past couple of years, that is like the be-all end-all of understanding how racism works in the medical system. Or potentially all three factors of queerness and inter-racialness and fatness. But I've seen just true coldness come over these nurses like I've never seen before. And I'll be the first one to say I've had a lot of negative experience with nurses. So I'm glad that a lot of people want to celebrate them. But I find that field in particular very problematic. And also they're not being served by their system. They need therapists themselves.

Lauren: Yes. As do the doctors, to be quite honest. Everyone does.

Rachel: Yeah, totally. But they’ve seen a lot of trauma, a lot of things. And often I'm in oncology centers, and that’s really hard.

Lauren: Is that because of the infusions for Remicade, you're going to the oncologist?

Rachel: Yes. That's because a lot of hospitals don't have infusion suites just for other types of infusions. And that is extremely traumatizing, to be still very young and be surrounded by that. So in my dream, I will have an infusion center that is like an East meets West place where we can do everything in one, but have it be a comfortable experience.

And why aren't nurses and doctors having diversity training, as a side note?

Bringing my partner in, again, to this all-white place in Maine, for example, was different than bringing my partner in to some of the places I was in the Bay Area, to be honest. So that's important to name. It is very much couched in New England, that the starkness of the anti-Black racism comes forward through them not interacting with very many Black people. So this nurse just essentially refused me treatment because she was unhappy with my partner. I had tried to advocate to make sure she was going to take my … this is like the depths of the shit we do … I needed to make sure she was going to take my blood, and specifically take a vial to test my vitamin D level. Which is something they always forget to do, even though there's an order and it's a whole thing.

Lauren: Yeah, how does that happen? Whenever I have an order for blood, there’s one thing left off. It never ceases to amaze me.

Rachel: It’s like the more and more there is, the less they all communicate with each other, or something. In any case, I just want to say, the more I seem to be an advocate for myself, the angrier nurses and doctors — the ones that I don't want to work with anyway — the angrier they get, or the more defensive they get.

Lauren: Because they don’t like being called out, and they don't like a patient who seems to know what they want.

Rachel: Right. So just from me asking for vitamin D … and then I think she left the room to get the needle. Again, this woman who’s going to stick a needle in my arm comes back in. And my partner reiterated, “I just want to make sure you're gonna be able to take the vitamin D, because her blood coagulates at a certain point.” She just had the whole thing down. And the woman just snapped at her and was, like, "I don't like that you're being so aggressive with me!” Like, typical white response.

Lauren: Yeah, that’s a really white privilege response.

Rachel: She had calmly advocated for me to have my vitamin D level taken. We were, like, “What?” We literally were so caught off guard. She proceeded to throw a tantrum, and then was, like, “I'm not doing this, I am not doing this!” And then she literally put the needles down, that she was about to stick me with, and left us in the room. And then nobody came in. And I waited all of 10 minutes before I stormed out in true Sagittarius fashion, to the emergency room, whereupon they told me they could not infuse me with Remicade. And all of the beds were full. So the head nurse had to take me back to the infusion center. And I had to get infused by racist pieces of shit. Then I just had to sit there in a chair with a bunch of people who … I knew I could never go back there again pretty much.

Lauren: And this is the thing … there's trauma on both sides, right. As you had so intelligently observed, nurses and doctors, they need therapy, they also need diversity training. But as a patient, you're already dealing with a potential trauma every time you go near a medical center. Just moving through the world can be traumatic. So there's trauma on both sides, and how do we learn to meet one another in the middle unless we take the time to try to understand one another?

Rachel: Great question!

Lauren: That’s more of a rhetorical question. I don't expect you to solve that problem in one day!

Rachel: Yeah, no, I think that's the question that more people actually need to sit with.

That’s the question that drives my whole passion of life and my work — bridging the gap.

And understanding why those of us with chronic illness would have offshoots affecting our mental health, anxiety, depression. And why the medical system is just dropping us, essentially, is very problematic. 

Lauren: And we're gonna get into your work in just a minute. But I wanted to ask you, based on these experiences, do you think that many of the adverse experiences that you've had, could potentially have been avoided if you presented as a thin woman, or if you were a white man going into these appointments, or if your partner maybe had been a white woman instead of a Black woman? Do you think that some of these situations could have been less traumatic for you because people are holding these inherent biases?

Rachel: Yeah, when you ask that, or see that, it really illuminates to me how much I don't live in that space. I couldn't even fathom what it would be like to be in a thin body, or a male body. 

Lauren: It’s probably a good thing! You should be enjoying your experience of you, rather than wishing you were something other.

Rachel: Right, but also I think thinking of it, like … whoa, there's something about that, that just kind of hits me in the heart … to be like, oh, that fucking sucks, just thinking about it.

Lauren: I’m so sorry I asked that question. Let's just pretend we didn’t talk about it!

Rachel: No, I think it's important, though. I think that's actually really important to be asked. And the short answer would be … yes, I do think males are treated … I will totally try to find this article, if I can find it or send it to you … that was the time it kind of broke my heart, but a woman just kept getting misdiagnosed. I think that happens for women. I think that happens for a lot of women with Crohn's disease as well, whether they're skinny or fat. There’s a lot of misdiagnosis in actually getting to the real issue. But she wrote a whole article and she was, like, “I don't think anything would have happened me if I wasn't a visible woman of color” was her experience. So short answer, yes. And that’s pretty much what is still wrong with the medical world right now.

Lauren: Would you also say that these racial, gender, fat phobia, these inequalities in the health care system, are tantamount to a public health crisis?

Rachel: Hell, yes.

I do not think obesity is the epidemic; I think weight stigma or fatphobia is the epidemic, and that's what we need to be treating.

And what I wrote my 40-page thesis on and I presented it in a roomful of mostly thin, white, able-bodied therapists. Because I thought, four years with these people, and I don't think any of them would I trust to work with people who are fat, or to work with people who have chronic illness, and that fucking broke my heart. And that made me want to work with my communities even more. And again, for some people with Crohn's, it can be hard to see someone like me, who's still able to thrive in certain ways. And not eligible for surgery, for example. So I will never have that experience of having a stoma. Or, I am not so fully debilitated in my everyday life that I'm bed-bound or things like that. So, again, it's on a spectrum. And I think for especially people with Crohn’s, in particular, there’s a massive gap there between supporting them with their mental health. I learned that some people just take pain medication. I’m allergic to it, but that's definitely not a thing for me. 

Lauren: The effect it can have on your stomach and intestines is probably not a positive thing when it comes to a disease like Crohn's.

Rachel: Yeah, it’s all very intersectional. See how it wasn't hard to grasp that? Sometimes that’s a concept that’s even hard for a doctor to grasp.

Lauren: Which shows the lack in their understanding. But they're learning about so much that they almost can't learn about anything specifically enough to be able to treat it.

Rachel: Yeah, exactly. And I think that's why pediatrics has that sweet spot. Because … I don't know … they're still focusing in on a specific population.

Lauren: Right, absolutely, there’s more of a specialty. And with kids, part of the training, I think, is also about being more sensitive. Which we need for adults, too. Just because you're like that with kids doesn't mean you shouldn't also be with everyone else.

Rachel: Yes, shout-out to all the people who are child life specialists, which is something I turned in in undergrad. But we need adult life specialists that aren't just social workers, to be quite honest. That’s maybe someone who comes to visit you when you're alone at your infusion. And maybe they give you an arts and crafts project — because why does that need to stop just because you’re not a certain age anymore.

Lauren: So let's talk about your advocacy work. Tell us about your work as a somatic therapist — what that means. I know you touched on it earlier. And this idea of divesting so that you can treat people worldwide, and how that's impacted your practice. I'm curious to know the role that your chronic illness plays in all of this work.

Rachel: So, again, for anyone who isn't aware, somatic therapy, or the training that I did, essentially centered in the mind/body connection. And so for me, I very much honor that. It wasn't until I got to work in my personal life with a somatic therapist, and she also had an autoimmune disease and an invisible disease, that I finally felt like I could reclaim my mind/body connection. So that means that I work with people beyond just talking. I think that's important to name. Even though we do work virtually, which is something, as I mentioned before, I've always done. Essentially, both for myself to make this work accessible for me, and for my clients to make it accessible for them. Whether they’re single parents, whether they're from communities that typically have been like ‘going to therapy is not okay’.

The Black community doesn't have that same experience with therapy. And that's because the psychology community was very racist, and it's very valid for them to feel like that. 

Lauren: And because there’s distrust in health care for good reason.

Rachel: For a very good reason. One of the nonprofits my partner and I are looking into starting is actually a nonprofit specifically for Black people who become diagnosed with a medical illness or cancer. As like a resource base, because we're losing far too many Black people because of the invalid health care they're receiving. And that's not okay, ever … but it's 2020, so it's certainly not okay now. Not to sidetrack too much, but decolonizing the therapeutic practice. That's a word that's going around a lot right now. But really, I feel like that is what I essentially do and have been doing. I chose to not be in licensure. If I was a very wealthy, probably well-positioned white person, yeah, I probably could have afforded to get licensed in every state that I'd want to work with someone in. However, I did not find it therapeutic that if my clients ever had an emergency or needed to leave the state, I would legally not be able to speak to them as a licensed therapist, as a true across-the-board. That in and of itself is not therapeutic.

Lauren: That creates a discontinuity of care.

Rachel: Right, and then also, I wanted it to be accessible. So the most physically accessible is to be wherever people are, and they can pull me up on their screens. But also monetarily accessible. So I work on a sliding scale basis within a certain range, depending on people's situations and whether they're working, how much money they make, and things like that. So that also allows me to work through an intersectional and social justice lens as a therapist, by setting up my therapy business in the same way that I model the activism work that I do, or everything that I do.

Lauren: Well, really and in providing care in the way that you would like to receive it as well.

Rachel: Two things I do as a therapist … one, I call them ‘confetti popper moments’. I literally get a confetti popper.

Lauren: No way! 

Rachel: I celebrate my clients when they have … sometimes there’s these big wins that nobody else sees, but I get to see them.

So we have a confetti popper moment and then we get to celebrate it. In the pandemic, I branched out to jazz hands and spirit fingers!

(laughs) Clients see me dancing around when confetti poppers aren't accessible. But what you just said made me want to have one of those moments — but I forgot I hadn't introduced that concept to you yet. So yes, jazz hands is pretty much what I do in session.

Lauren: That’s so lovely. Yeah. And it's amazing. Because this concept of having a cheerleader on your team, this is what therapy really is all about, right. And I think often that point is missed, when the medical system doesn't necessarily support therapy from really a very therapeutic lens. Particularly as you're saying, with this licensure and divestment … if licensing is actually something that's going to exclude others, then actively choosing not to participate in that system is one way to push to create change, and to give validity to the work that you're doing outside of these confines.

Rachel: More jazz hands, that's all I can say! (laughs) I just want to say really quickly, it's both/and again, for me. I am a huge fan, I will say this time and time again, of using one's privilege to infiltrate fucked-up systems from the inside out, so that you can start trying to systemically create change. And so I do believe that we will come to a time where the BBS, the Board of Behavioral Sciences, the be-all of licensure … again, not to be crude, but generationally speaking, the majority of them are 60 and above. They're still doing everything through snail mail and making people wait two months to get their licensing. That generation didn't have to worry about student loans or debt, or anything like that. So I do think once us elder millennials and the next generations start to take over those systems, it will be again, both/and. Hopefully, changing the system to be more inclusive, but then again, honoring those of us that, at least for right now, it does not make room for — so we do this work in other ways.

Lauren: Absolutely. So I know we've talked a lot about the healthcare system. And you don't have to have an answer for this question. But I'm wondering … we’ve talked about a lot of the ways in which the healthcare system can improve. Are there any ways in which it's actually working the way it's currently designed? Or is that just a ‘nuh’?

Rachel: You know what was funny, I saw that question and I think I laughed out loud! Because I could go on and on about that.

Lauren: Yeah, we talk so much about how it's broken. I'm wondering if there's anything that needs to be preserved when we do burn it all down to build it back up again.

Rachel: To be honest, well, we did touch on this gem of whatever's happening in the pediatric world, again, there's still some dangerous fucked-up trying-to-make-a-child-lose-weight things that happen. And the atmosphere is more healing than any … I've gone to more hospitals on the West and East coast, from Cedars-Sinai to Brigham and Women’s. And I would say, what works are the people who still care.

What works are the individuals who still have compassion, and they're able to hold space for the whole person that comes in.

Nothing else, for me, resonates as much as that does. So when I have those moments, like my gem of a nurse practitioner, who exists here in a small town in Maine, she somehow gets it. She's a very intersectionally feminist. She's very inclusive, as I've grown over the years, of my queerness. She knows and loves my partner, and is very respectful of her. She's very non- … whatever the opposite of fat phobic is … she’s very size-inclusive, and believes in the concept of the possibility of health existing at all sizes. So those are the people that make that work. And what I want to say to any of those people listening is, we just need you to be a little bit more courageous than you already are, and try to make some of those waves ripple out, because it can't just be you. And it can't just be us in that office; it has to be the whole … your boss, and your boss's boss and their boss, and then the system, the whole thing. So I think that's what works. Ongoing evolution, I think.

Lauren: So I'd love to get into some Top Three lists as we head into the ending portion of the interview, and I'm wondering what your Top Three Tips would be for someone who suspects maybe they've got something off. Maybe they're already diagnosed with Crohn’s; just someone who's living in this Spoonie spectrum with us. What would your Top Three Tips be for navigating life with invisible illness?

Rachel: So number one, is this concept of both/and being in everything. So, as much as I believe that most people can be supported by Western medicine, I also believe it's vital to explore beyond that, and look into other modalities that are going to support your body. Every single week, I see a chiropractor, a massage therapist, a physical therapist, and a cranial sacral therapist. I know that's a lot. But with where I'm at, and my pain levels and everything that I manage in my body, I have gotten to the place where I can have the system understand these are things I need for my Crohn’s … even if my doctor has to write down … which is very true … oh, she has a sensitivity in her neck or whatever that is. They don't look at you as a whole system, so you have to look at yourself as a whole system. That's within the Western medical field, that's in other modalities that might resonate for you. And that's also in how you're moving through your day, how your nervous system is feeling, how you're nourishing, how you're hydrating or resting. So it's probably more than a number one.

Lauren: Those are Top Three all in one, but I'm open to more!

Rachel: I think that's it. It's all wrapped into one for me.

Lauren: Yeah, take a multi-systemic approach to your own body. Advocate for what you need. Both/and.

Rachel: Actually, maybe my real number one is, please, please consider seeing a therapist if you are feeling off. And please consider, you always have a choice actually, for as fucked-up as a system is with insurance and everything, you can work it.

You do not have to go to the first doctor you see; you don't have to go to the first therapist you see. You are finding someone that's working for you.

They're not just assessing you, you are assessing them. And that's really important. That's my other thing I want to say.

Lauren: What about a Top Three list of things that give you unbridled joy. This can just be when you need a moment of joy, like a confetti popper moment. Obviously you've made lifestyle adjustments because of living with Crohn’s … and I want to know what you would never compromise. This can be a guilty pleasure, a secret indulgence, a comfort activity if you're having a flare — but three things that you turn to, to light you up.

Rachel: Yes, I love this. My therapist self has to, of course, preface it with … I don't actually believe there's any such thing as a guilty pleasure. 

Lauren: Love it, thank you!

Rachel: It’s just pleasure, period, and we get to unlearn that guilt. So what I want to say is, what I would call joyful movement. So moving my body in any way that feels good, is top on my list. Creating something different in my physical self helps create a shift in my mental self. Number two, dark chocolate. And overly expensive smoothies that I could probably make myself, but I like when somebody else makes it.

Lauren: It’s like the coffee indulgence for other people who like to just go out — and it tastes better when someone serves it to you.

Rachel: Other people who don't have Crohn’s and who can probably drink coffee without getting sick! So that, and then … actually, I just looked up and I saw it on my bookshelf … I would say pleasure and pleasure activism. Pleasure Activism is an amazing read, I think everyone should engage in. I actually run a book club ongoing, and that brings me tons of joy. But helping myself and supporting others to find new pleasure pathways, and not just lean into the long-held pain cycles which our body really biologically wants us to, but really makes me feel pleasure is one of my top joys. Joy itself. Pleasure itself.

Lauren: Yes, that's beautiful. And that can take on so many forms, so that's such a lovely concept. I love that idea of pleasure activism. And we'll have to link to the book as well on the website for this episode. So what is your ask for listeners today? What can they do to support you and your community in this ongoing work that you do?

Rachel: That is a great question. The very first thing you can do is to learn what is going to support yourself. I do have a lot of resources for that. So I would love … people are always welcome to connect with me, or reach out to me about those resources. Whether it's a therapy session, or being part of a group that I run. I also teach yoga, I’m a yoga teacher as well. And I also recently created a whole self-love journal for people.

Lauren: That’s amazing. Is that available on your website?

Rachel: Yes, it will be very, very soon. Because my other secret is that I am not great at technology!

Lauren: We talked about this; this is an elder millennial thing. We grew up on Pac Man.

Rachel: I would be keen to use technology, but I’m not the best at doing it. So yes, all the offerings will be available on my site. But first, my front line of everything is also my Instagram, @SomewhereUnderTheRainbow. And my website is RachelOtisTherapy.blog. I'll give you all that information. But yeah, all these things are available. And I just hope that people, take away knowing that there's totally alternative forms of support out there for you. Even if what currently exists doesn't feel like it.

Lauren: And what's next in your advocacy and in your wellness journey? It sounds like getting this self-love journal out there and expanding the offerings you already have available on your website and stuff, that's really the way forward, right?

Rachel: Yeah, I do a lot of collaborations. So getting to put my work out into the world is great. I also write a lot. I'll be happy to share those articles with you. I write for Healthline.

I write specifically from the perspective of a therapist, but also from the perspective of someone with chronic illness, which is really important.

So more writing, and I think eventually, I'm about to do my own book, because I have a chapter in a book that comes out in September. And that was my first step into my dream. So having a chapter in a book is really amazing; I'll share that info with you, it’s available for pre-order now. It’s about embodied resilience.

Lauren:  Is that the name of the book? 

Rachel: Yeah, it's Embodied Resilience Through Yoga, and then there's other words after it, but it's specifically within the yoga community. So it's for people who are from that perspective. But yeah, I just think about this. And then I launched a retreat business just prior to COVID. In the future future when it's safe, getting to bring groups of people together again in person will be part of what I do.

Lauren: It sounds like there was also maybe a non-profit that was going to be born in there, too. Just in case you weren't busy enough.

Rachel: Oh, yeah, definitely one, but more. But my partner and I run diversity trainings as well. We help large-scale organizations and small businesses bring that work in. I'll share all these links with you.Maybe I'll have my own podcast at some point, and get to have you on!

Lauren: I would love that! Well, Rachel, it has been such a joy speaking with you today. What a beautiful human being you are. Thank you so much for sharing so honestly and openly about your experiences, the good and the bad. And I'm so glad that there's someone like you out there who's trying to change the narrative in chronic illness and mental health for so many of us. So, guys, if you're looking for a somatic therapist, and someone who gets your experience, certainly look Rachel up and we'll link to her website, as well as her Instagram, on the website page for this episode. Rachel, thank you again for being on the show. You're a real bright spark, and I'm just so happy to have met you.

Rachel: You, too! You are also a bright spark. I appreciate meeting you, and I'm sure we will have more collaborations or magic to come.

Lauren: I hope so. I do hope so.

Rachel: Amazing. Now I’m gonna bop off and be a therapist again! So thank you so much.