Jane talks Derealization Disorder, PTSD and managing energy as an introvert. Plus, a bonus song!
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Jane DeRealizer about her experiences with Derealization Disorder, PTSD, and managing energy as an introvert.
Stay tuned at the end for a bonus song that I think is especially appropriate for the holidays.
And thanks again to Daivd Laurin, who helped me out with the transcript this week. It makes this whole process so much simpler to have help.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Okay, so I sent you my blurb. Do you have any other questions about what I’m up to? Does it make sense?
Jane: It makes so much sense that I’m gobsmacked and delighted because, I was like wow, I’m not the only person. I love when you said your diagnosis is subject to further discoveries and I was like “Uh huh yep.” I get it and I live in your world.
Brianne: Yeah, like I can say that about myself right now, but honestly who on earth knows what will be true in I don’t know, even six months. I mean I’m still getting tests done but I’m sure if I go to another doctor I’ll hear a different thing. And that’s just, it is what it is right.
Jane: Yeah, I mean it’s basically when the treatments or the definitions work. Then that’s great. And I try, and it’s also like a weirdly buddhist state like I was like, “Yeah, everything I have lines up with derealization disorder.” I could find out tomorrow I’m allergic to like seaweed and take vitamin q and be cured and be like, “Oh, I guess maybe those were the symptoms of derealization, but the cause was not the story that I’ve written up to this point based on facts.” Yeah, it’s weird. It’s so weird.
Brianne: It’s super weird. The way that I like to do it for the sake of the podcast is by just asking what health was like for you as a kid. Do you remember being a healthy kid? Do you remember being aware that something was different?
Jane: I was a healthy kid. I was, I don’t know have you ever seen the Woody Allen movie where the mother makes the son play chess in a football helmet?
Brianne: No.
Jane: It’s great, but I think it’s Brighton Beach Memoirs or no… that’s Neil Simon. Broadway something, Boardwalk something. So yeah, so totally healthy, but my mother would be like. “Why are you riding a bicycle? You could fall down and break your leg! Why are you running?” It was very hilarious, so definitely more of a book kid than a team sport kid, which I was told was weird, but you know we didn’t have the term introvert or highly sensitive person at that point. But I am both, was both, but no more of the fair share of misery than that would bring to a normal childhood.
Brianne: Yeah, fair. Fair, it doesn’t always start there, but I like to think about just how our awareness of what might be normal can kind of start when we’re a kid as we’re benchmarking against other people.
Jane: Interesting. Yeah, no, I think, give me a book and a tree and I’m good. Unless it was tree pollen season.
Brianne: Great. So then, when did you start to notice that something might be going on? What was the first thing that happened for you?
Jane: This is, again, the way I’ve been able to piece it together is subject to revision when I have a different aha, but I went skiing in Taos with a friend of mine. She came in from LA. I came in from New York. We both went skiing in Taos for a weekend. Nothing unusual. Both went home and got furiously ill. Her diagnosis was chronic fatigue and she spent years with doctors in devastating situations. Mine, I was at work in my ridiculously boring day job and was like, “Wow this is like the worst flu I’ve ever had. I need to go home because if I don’t get home in a couple hours I’ll be unable to move.” And that was 1992 and it’s been sort of a search for answers ever since. So excruciating pain, couldn’t lift my arms, couldn’t lift up anything, eventually had to go back to work because you know I needed to earn a living. The symptom that never left, which was the most terrifying, was this feeling of living in a dream. Like I woke up and I was like, “Oh, this is really scary and weird, but I’m sure if I get some rest, it’ll go away.” And here we are 26 years later going “Wow, this is really weird stuff.”
Brianne: Okay, so it sounds like it was definitely sudden onset and probably, there was some kind of cause, especially if two of you got some kind of sick at once. This is what, if you’ve ever done any reading about chronic fatigue syndrome specifically, I know that the diagnosis started as a kind of cluster diagnosis. So a whole bunch of people got sick at once. But it’s not treated as a… communicable is the wrong word, but it’s not treated as a disease that we get externally, basically. But when it first happened, they brought in the CDC because it looked like an outbreak. And it’s like… this is a thing that happens in outbreaks. What does that mean? Because we no longer treat it that way. I mean we don’t really treat it at all.
Jane: No, it’s more of a guilt thing. It’s like that’s really your fault, flawed human.
Brianne: Yeah, it’s like a mental health problem exclusively which, of course, they’re tied together. So you both got sick together and it sounds like it’s been more or less constant, but initially you said it felt like a flu. Then there was kind of a physical sensation and then also a cognitive sensation. Does that sound right?
Jane: Yeah and the physical got better over time and the cognitive remains, but I sort of feel like the pioneer in solving that part of the mystery, I think. Which doesn’t make it go away, but at least gives me the comfort of having some sort of narrative and discovery that maybe make sense out of it.
Brianne: So then did you go to the doctor?
[Jane laughs]
Brianne: Or at what point did you start to interact with different practitioners, or did you?
Jane: Sorry, not to laugh, but if I had a girl scout badge with every doctor on it, my girl scout sash would be full. Initially I went to the doctor and got a recommendation… like my mother, somehow I guess I called her on a Sunday and said “I’m really sick.” She said, “I have a friend who has a good doctor in New York.” I went to the doctor and, you might relate to this, perhaps listeners might relate to this. So I went in to honestly describe my symptoms and got the eye roll and Mr. Doctor said “Take some vitamin c, that usually fixes stuff like this. And if it doesn’t well, I don’t know, but maybe come back.”
Brianne: Great. Thank you for your commitment to helping me.
Jane: It was amazing. Yeah and again I know we only have an hour so I won’t give you the whole list, but I literally have been on the end of a vitamin c IV drip. I’ve done the coffee enema, which all coffee enema users out there, wow, that was wild. I’ve done the naturopathic thing, I’ve done the energy healing thing, I’ve gone to the mainstream doctor and said “Could this be allergies?” I had a friend who is a doctor who I won’t name cause he’d probably get in trouble who ran me through his MRI machine on his lunch hour to see if it might be a structural brain-sinus thing. So I sort of… what’s that hilarious 70s song “I’ve been to paradise, but I’ve never been to me.” So I’ve been to every doctor, but I’ve never found someone who made sense of this or helped really
Brianne: And what stands out… so something that I think super resonates, of course, is the being dismissed basically. So either not being believed or not being understood first of all, that feels like a really common theme. And then I think we, in my experience of chronic illness, it’s so hard when we have a language that isn’t built for it. So when you’re trying to kind of map your own experience onto the language that we have, have you ever… Do you feel like that’s something that you’ve ever done successfully? Or do you feel like that’s even a part of the battle that you’re still fighting?
Jane: Oh, I think it’s absolutely a part of the battle because I was a Comp-Lit major as an undergrad and one of the lessons I remembered is that you can interpret a piece of literature to fit any structure that you bring to it. So back in undergrad, it would be like you can interpret this as a marxist. You can interpret this text as a feminist. You can… and what I realized when I was seeing these doctors is they were interpreting my story based on their own filter or their own study or how they define themselves that had absolutely nothing to do with me. We weren’t really going to reach any accommodation because they were imposing their diagnosis on my situation as opposed to trying to discover what the truth might be. Does that makes sense?
Brianne: So that was a laundry list of things that you’ve tried. How does that map onto what has worked at all or what you have found helpful? Maybe in ways you didn’t expect? And has anything that you’ve tried that made things worse? What’s the spectrum there for you?
Jane: Well, let’s see, boy. Okay, well. Sorry, I was just getting like a whole laundry list. So there were the things that were crazy but benign, and perhaps they weren’t crazy and they might have worked for other conditions, but weren’t helpful to me, ie. the sort of food fasting thing and taking away every possible allergen, which I don’t dispute I think would have been helpful if I had had a food allergy. The coffee enema thing was certainly an experience that you can dine out on, that might be the wrong expression, but it was certainly dramatic and weird. It didn’t have any negative effect but the infusions of vitamin c IV drip were expensive and charlatanesque I believe, so no harm, definitely financial damage, and just creepy weirdness.
Things that almost killed me include, at one point I developed severe anxiety and insomnia, insomnia probably more from living in New York, but extreme anxiety from living with this condition and being so undiagnosed and the suffering that went with it and the constant denial. Eventually was prescribed antianxiety meds and sleep pills in doses I later found out had probably been appropriate for about a 350 lb man. That was horrible. And I had side effects to all of them. I’m the kind of person who if I take a baby aspirin, I get side effects. So I had every side effect in the book that you could have imagined. And then when I just quit them cold turkey I got all the withdrawal symptoms, including, which was so odd because they’ll always say, “May lead to thoughts of suicide.” And I had like the one thought which fortunately was so bizarre that I just dismissed it. It was sort of like, you should throw yourself under a bus and it’s like… I hate the bus. I’m not doing that. I was like “Man this stuff, this stuff. It’s really dangerous.” And I feel fortunate to have escaped with only the awfulness that I dealt with. So that was definitely the worst.
What was really interesting to me is what finally diagnosed me was my own mind. Which was the subject… like both the patient and turned out to be the doctor. And I became very focused on writing this novel that was sort of a version of Cupid and Psyche with an invisible leading man character. Who I assumed was a friend of mine who had died when we were in our 20s, my first boyfriend who I thought was coming back to haunt me in some way, which I was getting sort of annoyed about. Only to realize when I went to find an agent for the book, one of the agents I was looking at had an author who wrote a book about depersonalization disorder. I was doing my research and I went, “Now that sounds very similar to what I have.” That was the first opening I had to the research that led me figure out, at least that I believe that what I have is derealization disorder
Brianne: So what was that like? Can you describe a little bit that first research into, you said depersonalization disorder, what did you learn about there? And what was it like? What were you seeing reflected?
Jane: So the person who wrote the book on depersonalization disorder was talking about this feeling of… what I experience is there’s almost like a screen between my eyes and the world. It’s very physical. It’s like having a veil dropped down or like a weird window shade where you’re just like… if someone would just pull this thing up, I could reconnect and feel really the way I used to. He was describing the symptoms of depersonalization disorder, which is somewhat different. But in a very similar way that you’re perfectly present. There are no delusions, you’re not having any dissociation in the sense of not understanding what’s real. Your emotions are totally in line, but with depersonalization disorder, I think people lose their connection to themselves so they can’t identify their own emotions. But they know exactly what’s going on. And I was like, “You know, not exactly what I have, but certainly the closest thing. Wow. Despite what I’d been hearing and what I knew to be true myself, this is real, this thing is real.” I was sort of hoping for more connection with the book and the author and the community and I didn’t feel that, but at least it was like going from a population of one to a population with some relatives in the world.
Brianne: That must be really validating. I know just in my own physical experiences when I read somebody else describe something related, you’re like “Oh thank god!” Because there’s a big part of me that’s just thinking, “Maybe I am either mis-remembering my own experiences, or maybe everybody feels like this, and nobody’s talking about it.” You can come up with so many explanations just to try and make the world make sense again when it stops making sense.
Jane: For sure, yeah, absolutely. I think also to your point, to me there always felt like an undercurrent of, “You’re faking, you’re making this up, you’re oversensitive, normal people wouldn’t have a problem.” I would sort of, over the years, I don’t know if you’ve tried this but I would try to put out feelers with people and be like, “Yeah, I’m really dealing with this pretty terrible thing.” And there’s just the immediate, either the eye glaze or the shutdown of like “I don’t know what this is, you’re scaring me.” Or “I don’t believe or fully give credence to your experience, let’s move on.”
Brianne: It’s like, “I don’t have context to understand what you’re saying.” So it’s not landing, however it’s not landing.
Jane: It’s really interesting. I don’t know if you’ve been following, I guess there was a book that just came out about endometriosis and the false diagnosis of women with endometriosis and the things that they had been told. There was a big thread on twitter where the author just said, “Can anybody relate to going to the doctor and having your diagnosis dismissed only to find out it was real?” I think she got so many hundreds of thousands of responses that it was like “This is a big issue. It’s a really big issue.” It’s just not, it’s almost because we don’t have the words to make people understand that people don’t get it.
Brianne: I don’t know it. But I will absolutely look that up because that sounds like it’s right up my alley. But there’s a commercial on tv right now, where I live at least, and I don’t know if it’s from an advocacy group or like a fake advocacy group that’s really a drug company, but anyway, it’s about endo and it’s this woman sitting on the bench at the doctor’s office and the doctor’s asking her about it like “How’s your endometriosis?” and she goes “Oh, it’s fine.” Then there’s kind of a second version of her which is I don’t know her brain or something saying “You’ve got to tell him that actually, it’s very painful.” And the message of this ad is that the reason that women aren’t getting treated for their endometriosis pain is that they’re not speaking up and I’m just like “That is not the problem.” I’m sure that there are people who are not comfortable talking about this, but I hear way more stories from people who go in and they outline exactly how they feel. And they put their pain at a ten on the pain scale and the doctor doesn’t care. That’s so much more common, and so this ad is insulting to me.
Jane: I just saw it last night, and I had the exact same reaction. It blew me away. It was like… I refuse to call the patient the victim, but just to use the expression, blame the victim. Blame the patient. Where I looked at that situation like, first of all, I wouldn’t see this dude as a doctor if you paid me. Second of all, yeah, none of this. It almost made me wonder if the book that had come out I was like “Oh my gosh, is he part of this conspiracy too.” It was terrible. It was really terrible. I caught it, it’s bad and I think it’s a drug company. I think they’re basically saying you know, don’t sue the doctor, and you can’t sue the doctor it’s really on you.
Brianne: Yeah, I forget what the name was that pops up at the end, but I suspect it’s like a front for something else, but it’s rough, and it’s exactly that thing. So when you find out that your experience is actually real, I’ll even call it, it’s such a change. So you read this book and a light bulb went off. Did you take that to anybody? What did your further research look like? What happens next?
Jane: What was especially challenging for me is that my situation started pre-internet. So if that had happened today, obviously I would be googling the heck out of all these terms. And at this point we’re definitely in the internet age, but we’re not in the google your dreams kind of situation. So I managed to find a psychologist mentioned in the end notes of the book who specialized in depersonalization disorder. So I called her and became a patient and I sort of thought “Finally!” And she’s a woman, and I have all my positive prejudices against that. I showed up and I was ready for her to say “Oh my god, this must have been so rough for you. I’m so glad you found me. We’re gonna work on this together.” And it was sort of like “Okay, we have 40 minutes. What do you want to talk about?”
Brianne: Yeah.
Jane: Then, when I would start to say “This is really distressing.” She would be like “You know what, we could maybe get you a prescription for an antianxiety drug.” And I was like “Did you not hear this whole story that I just spoke about?” Interestingly that psychologist’s office was in the same building as the male doctor whoever prescribed me all the meds. So I was like… I’m sort of back in this paradigm again just on a different floor, it was the only thing that’s improved.
Brianne: This is the anxiety medication place?
Jane: Exactly. And I don’t know if you relate to this. But what was comforting me were the weirdest things like, “Oh, it’s in SoHo! SoHo’s full of artists and cool, so therefore, I will find my doctor here and my cure. As opposed to on the upper east side where they hooked me up to an IV drip of vitamin c, which was crazy and kind of Stepford Wifey.” But yeah, eventually I’ve sort of come to the belief that I know more about this condition probably than any professional that I can see, although I don’t rule out the chance of finding my dream medical partner and having them know more than I do and helping me work through the end of this, but I don’t know.
Brianne: Yeah. So you saw that therapist and it was just… I love this idea that treating your distress around it would be the solution. Like, “Oh, I noticed that you seem really upset by this major change in your life experience. Would you like it if you could be less upset?”
Jane: “Can we just numb you out?” Yeah, exactly. And again, it’s that weird thing of I’m the problem. Like it’s your reaction, like someone who’s nicer, a better person, would just suffer in silence and walk through their life going, “Well, my whole cognitive structure seems to have been altered by either something viral or trauma, which is what I’ve come to believe.” Although again, I don’t know. But it works as a diagnosis. Yeah, it was just… and she was super nice, really nice lady. But in the end…
Brianne: Just not helpful?
Jane: No.
Brianne: And then it’s true that the internet has changed so much, which I think can be good and bad. But in terms of resources and stuff. So after seeing that person who was not super helpful, where did your own research take you? Were there other books that you found or were you kind of in a waiting area until the internet picked up? What did that look like?
Jane: Well at this point I moved to Colorado. I was living in Brooklyn, I’d been in New York City for a really long time, and I’d also managed to add onto this happy symphony of this syndrome that I had some acute PTSD, because there’s nothing more fun to add to some derealization, you know like a chronic illness, then just a hit of a really acute illness that can really rock your world. So I moved to Colorado, which was great and in many ways a lifesaver. But I was also dealing with trying to manage PTSD, trying to manage derealization disorder, and then ended up with pneumonia. So I was like, “Well, okay, I’m kind of busy here. I don’t a lot of time for research. I’m self employed. This is really about survival.” And also one of the things I am is a voiceover artist. So when the pneumonia hit, it really… everything became a challenge. So. I was seeing a therapist here, again super nice. And I was really excited because she was a buddhist. So I was like… again projection. I’m just like, “Ahhh, okay, the buddhist is going to have the quiet space in her soul to hear what I’m saying and help me work through this together.” And again, super nice person, but that didn’t really happen.
So research put on hold for quite a while, but I continued to work with this novel which I had brought with me. And it kind of kept saying to me, “Listen this invisible person that you’re writing about that you think is somebody else, you really need to look at this, and you need to consider this trauma is something very real. Stand your ground. And really respect yourself in becoming sort of the David Copperfield, that sort of main character, the hero of your own story.” And at that point I started taking things apart one by one. I found someone who was a really great naturopath and worked on some EMDR and EFT, so looking at things that didn’t necessarily… my rational brain wouldn’t embrace normally, but tapping and breathing and I was also doing yoga and running. And so it’s sort of one by one I moved the pieces out, sort of took the PTSD piece out, moved that aside, still working with the respiratory stuff but mostly have that fixed. And then with the derealization disorder sort of came to the place where I was like, “Yeah, I have it…” So by this time I was able to start looking things up and sort of found out that my symptoms matched a term. But not, there’s no cure information. So.
Brianne: Yeah, so you had a term. And did you look for other people is that something that has been appealing to you?
Jane: As an introvert who spent her life not knowing that you could be a proud introvert and stand your ground, I’m not really a group person. Like the idea of sitting in a room with 25 people with derealization disorder is kind of…
Brianne: Yeah.
Jane: Yeah. Although it would be kind of comical because everyone would be like… I mean, it would just be so weird. So that wasn’t really an exciting option for me. I’d found some groups online and again, I was sort of like… that’s not really my bag, although I would hope if this interview could be helpful to someone I would love that way of sharing positive information, so no. And again, I found some interesting facts like Freud supposedly experienced depersonalization disorder in a flashing moment before the Acropolis, before the grandeur of the Acropolis. It was such an overwhelming stimulus that he felt completely disconnected from his normal self and in this sort of dreamy state. So I’m like, “Okay, well, there’s some popular, some cool kids have had something related to this. That’s always nice to have. Company.” But the idea of finding a group hasn’t really been something that I was drawn to.
Brianne: I know I don’t, I also don’t… I mean I love talking to people like this, I have sought this out. But what I really hunger for, I love personal essays and memoirs and there are some, and maybe there are more coming out that are… I don’t even, it’s not about any specific condition, but just about the experience of having to strike a new peace with your body outside of what medicine can handle. And I just really hunger for those stories as a way to connect with people. So not so much, not so much sitting in a support group whatever that might look like, but just it’s the validation and that language building. It’s like every time any of us talks about this, about whatever it is among different conditions, but we’re kind of building a language together for trying to describe it. And I think that’s the good thing about the internet.
Jane: Yeah, I think you’re right. I mean, I will say in my little instagram account, I am tagging myself as both an introvert and an hsp. And I do love… and again I think this is a very introvert way of connecting and moving through information. I do love finding these little posts or these little things like, “Oh, I’m actually not alone.” Because I don’t know if you experience it, but the loneliness of this kind of challenge is really one of the most stressful and sad parts of it. Just trying to do your best, trying to be your best, trying to use your brain to figure it out, trying to be a good girl. And then feeling completely isolated, not to mention disbelieved. So that’s comforting.
Brianne: I definitely relate to that, and I also I feel like in my experience the people around me… One of the reasons that it feels alone is that the people around me are waiting for me to get better. So they’re like, “I don’t really get what’s going on right now. But when you go back to your regular self, we’ll just pick up where we left off.” And I don’t think… I’m not saying that with malice either in my interpretation or in their actions. But I think when somebody just doesn’t know what an experience is like and it’s not represented in media at all, there’s just this really big empathy gap that makes it so difficult for people to imagine and so that can be incredibly isolating.
Jane: Yeah, I agree. And it’s also the invisible… disability, invisible challenge scenario is that because it can’t be seen. Like if you went and your leg was broken in three places and you showed up to your friend’s softball game, they wouldn’t be like, “Well come on! Just tough it out and run the bases.” They would be amazingly compassionate. Also because… in journalism, there’s a term “the newsless who,” where the closer a story is to home and represents a person more like you, the easier it is for the reader to empathize to your point. And the further away it is from most people’s experience, the harder it is for most people to relate because they can’t put themselves in that scenario. And it’s not a selfish thing, it’s just a human… like, “I don’t get it. I don’t know what this feels like. I don’t know what the challenge is. You look fine, you look marvelous darling. So what’s your problem?” Kind of thing.
Brianne: Yeah, yeah, definitely definitely. Okay, so then, then what I wonder about… so it sounds like while you have seen many doctors, they have not really been influential in this process, or maybe not in a good way, which is totally understandable. But I’m just thinking through the things I want to make sure that I cover. So what have you found, in addition to all the maybe wacky things that you’ve tried, what is working for you right now? How are you managing out there in the world or not out there, but at home?
Jane: So my whole upbringing going back to being a kid and being you should go outside when you want to be reading a book or to hang out with a bunch of people when you want to be maybe with one person, the fundamental lesson was that anything that feels actually right to you is wrong. So I was trying to tough this thing out, first living in New York City, going to a bunch of auditions a day, big social life. When I moved out to Colorado, I started standing up for my right to be quiet. And I mean that sort of in the Susan Cain Quiet book sense of the word, where it’s like… you know what? I am going to work at home. I am going to work on the projects that I can pour my heart and abilities into and I’m not going to do the things that deplete me and I will be okay with that. So goodbye to FOMO, goodbye to should, you know if only I was out doing this thing I hated, maybe I could book a gig with somebody. So that has been the most liberating thing for me. And, yeah, I definitely am… I work from home. I watch a lot of netflix. I read a lot of books. There was a point when the PTSD thing was happening where I couldn’t focus. So I’m so grateful to be able to pick up a book and focus for an hour. But it really is, it’s like being sort of zealously quiet and not really caring who thinks that means I’m a loser. Or not being as fun as I should be, not being as entertaining. So yeah, there’s that.
Brianne: Yeah, I hear that and I have heard versions of that as I talk to people about what it looks like to manage whatever the condition. And there’s some reframing which I think is what you’re describing, of going, “Okay. At first, it sometimes feels like I’m making myself smaller and making my life smaller.” And that is really hard. That’s a really difficult thing, and there’s grief in there. And then at some point you hopefully get to turn that around and go, “Okay, but what do I really care about and how do I get to just include that? So that my life is about making room for the things that I really care about, hopefully.”
Jane: Yeah, it’s interesting. I just did a little concert, so I’m a singer/songwriter/performer person and I’ve been saying to people that the assumption when you’re a performer is that you want the largest possible audiences, that that’s the measure of your success, or the ability of your art to connect with an audience. And I started to perform for really tiny audiences, and we have a wonderfully kind and fun connection, and I call them jewelbox audiences to say that each person’s a gem. And I went and did this little show, it was a 40-minute show in the yoga studio at 12:15 in the afternoon on a Sunday. The environment was delightful. I know you have chemical sensitivities, is that right? You’re sensitive to mold?
Brianne: Yeah, including. I have tick-borne illness and then I have… I was really sick with mold exposure.
Jane: Ugh. So this place is impeccable. It’s wood, but it has not one chemical trigger in it so the space is very calm and beautiful and zen and clean. People were just you know, moms and their kids and just whoever was going to be there, an older friend of mine, about ten people sitting on little cushions and the art on the floor… like everything. Nothing about it was like, “Let’s make this big and fabulous.” And it was… I got the feedback that people were elated. They were like, “We smiled through the whole thing. We all felt better.” And they felt seen. So I think that’s also the thing. As someone who’s felt pretty invisible, I’m now being like, “No. These are the things I stand up for, and come on kind people we’re going to rock it in this really quiet way.”
Brianne: Yeah, that sounds lovely. I think there’s definitely something to be said for intimacy, basically, and the time that you can choose to spend with people. So as you’ve learned to, I’ll say manage your energy, but I know that maybe isn’t quite the right way to phrase it.
Jane: It’s good. It’s actually great, “manage your energy” is a great term.
Brianne: So as you’ve navigated that… I know so much less about your condition, of course, and so is it something that fluctuates? If you overextend yourself, are things exacerbated?
Jane: Yeah, and what’s interesting to me is again… I mean we’re all a composite right? So we’re not an illness, we’re people who have multivalent things going on. So what I’ve learned is as an introvert and performer – which is an interesting combination and not an unusual one – after I’m done, I put my whole heart out there and then the batteries are exhausted. It’s time to go and recharge, and that literally for me looks like sitting on the couch watching the Great British Baking Show for like maybe six hours. Maybe getting off the couch to get a tupperware of leftovers. Really down to nothing. And that prevents waking up the next day feeling completely derealized, like if I get overtired the sensation in my eyes or else the top of my head really gets exacerbated. But it also gets exacerbated from lack of sleep, and it also gets exacerbated by allergy season, so it’s hard to know which factors… like is it a little tree pollen, is that exacerbating it? Or is it just pile on?
Brianne: Right. And I think that’s interesting talking about the introvert thing because everybody experiences that spectrum differently too, I’m sure. But going, “Well maybe even if this had never happened, I probably just would be the type of person who needs to rest after socializing, and that doesn’t it doesn’t mean anything medical.” But as it plays into this other thing of getting exhausted easier and having that be an issue so you feel more… I’m doing a hand gesture which won’t translate.
Jane: I can see you! We’re both gesturing.
Brianne: Yeah, so you feel more… is detached a good word to explain it?
Jane: Not really. I think that might be more the depersonalization side of things. I couldn’t be more connected. It’s just literally like if I could get a window washer for my corneas. It’s literally just that. It’s as though you’re like, “Man!” There’s like one millimeter of a layer between me and the experience of the outside world. Completely know it’s there. No questions. And I’m not detached, I’m completely connected. And that’s what’s so odd about the whole thing is that…
Brianne: Like your perception is impacted?
Jane: Yeah.
Brianne: And then that fluctuates. Now I’m gesturing more.
Jane: That’s okay. But you’re doing the thing in front of your eyes, and it’s literally yeah, I was like, “I wish it was eyeglasses, but it’s not eyeglasses. I wish it was a decongestant, like maybe my head is congested.” It’s not, but it’s that feeling. It’s just like… and I’ve heard the term foggy thinking which I’m not exactly sure what it means, but I’m not a foggy thinker.
Brianne: It does not resonate with you. I have been a foggy thinker and it is literally just like.. I can’t speak, like I’m not able to make good sentences because the words are missing kind of.
Jane: Wow.
Brianne: So yeah, it definitely is something that I’ve felt more in my brain compared to in that eye layer where it’s translating. So, yeah. And then is there… I mean I guess that is physical, but is that also a physical kind of sensation?
Jane: It’s very physical. I mean as unusual as it might be. It’s not… having been through the glories of PTSD. Like PTSD was physical and emotional right, because my body would be acting like the house was on fire and I’d be sitting at the library and something stressful would’ve happened. That to me was a physical and emotional combination. This is quite physical, and while it occasionally, or especially at the beginning would have an emotional component because it would be scaring the hell out of me and make me super sad. Now it’s just kind of like… all right. It’s not impacting my energy level because I seem to have worked through whatever that mystery Taos thing was. But it is exhausting because it’s just like, “Aw, come on, really?” You know, today’s not the day where it all gets back to normal? So it’s kind of exhausting and depressing to some degree.
Brianne: Yeah, of course.
Jane: Right?
Brianne: Yeah. So that’s now. So it sounds like you’re at some level of acceptance, but at the same time there’s a weight to that, which makes sense to me. And do you have theories? It sounds like yes, because I feel like they’ve dropped in a little bit. But given that you have not had anybody be able to give you a good explanation, what do you think is going on?
Jane: Well, the reading I’ve done says that these conditions which I definitely experience, you would experience them for like a day or so, and then they would go away over the course of your life. Which definitely happened to me when I was either sick or ill or whatever. But what I noticed, and again how much of this story have I just constructed because it makes sense, although it make sense so I’ll stick with it, is that I have gone through a series of traumas. First with the person who I was closest to dying at the age of 20. And technically we had broken up, so we weren’t exactly boyfriend/girlfriend what we were confidants, best friends, he was the person who really saw me, to bring up this metaphor again. And when he died, I was traveling. When I came back, noone wanted to deal with it. I was like, “I am in grief. My heart is broken. I lost the most meaningful person.” Everyone was like, “Yeah, well that was three months ago here. And we also don’t know how to deal with you. So we’re going to ignore that.” And the next friend I made was someone who died of AIDS in 1987, again when I was traveling. Came back, people were like, “Yeah. Again you sort of are out of sync with everybody.” So I had this series of really traumatic grief experiences that I had no place to put. And I think when the third one happened… As in all good stories, it’s like the law of threes. Being a highly sensitive person, and wanting to have fixed all of this, which I don’t think I really could have saved any of these people. I think my my emotional system just said, “All right, listen. This is a little bit overwhelming. This is too much for you to handle. We’re going to shut down the curtain on the amount of pain you’re experiencing.” That’s my working theory, how it jives with the sort of chronic fatigue-y thing I don’t really know. Maybe you’re more susceptible to it when your immune system’s down.
Brianne: Yeah, it’s an interesting question with your friend getting sick. Was there a trigger that got you both sick and then for you that being sick lead to something else? Or did the trigger cause both? I can imagine spending a lot of time thinking about that and trying to come up with new theories.
Jane: And there’s the moment of talking to my friend and she’s going, “And I have this symptom.” I’m like, “Me too!” “And this!” “Me too!” And I go, “And this!” And she goes, “No, I have no idea what you’re talking about.” They’re like, “But… we’re illness buddies. You’re my BF illness F.” But yeah, so that’s the theory I’ve come up with. Is it true? You know, I don’t know. But it seems to be one possible explanation of why this hit so hard. There was just so much grief and so much aloneness and so much inability to stand up and go, “Hell yeah this is what I feel and it makes total sense and you guys suck for not being more supportive.” But that wasn’t in my vocabulary at the time.
Brianne: Yeah, and I think grief, especially the first few times maybe we’ll say, or maybe it’s always. It has a lot in common with chronic illness that there isn’t a good language for it. Because there’s the word grief, and then there’s kind of sad, but sad isn’t right or like loss… the way that people map it onto their own experiences doesn’t make them equipped to support you if they are not equipped to support you.
Jane: Yeah, and I think that… and I heard it over and over again with people. You know I would break down crying and people would just walk away. Someone once surprised me with the roommate of my deceased boyfriend at a party. They thought it’d be hilarious to just have him pop up out of nowhere eight years later. And I completely fell apart. I hadn’t seen this person. And they were like, “God, why are you taking it so… we didn’t think you’d take it like that.” Like wow, this is a kind of heartless world that I’m in. And again it’s being rendered invisible, right. You’re like, “I’m in extreme pain.” And people are like, “Well that’s wrong.”
Brianne: Yeah. I’m trying to think of what else is on my list of things to cover. It was about taking your health… I mean you kind of listed your experiments, but it sounds like for experiments or things you might read about in books or the internet, you didn’t find anything actively helpful, which is fine. But I’m just trying to remember because I’m so interested in that, because people do find… I mean you talked about coffee enemas, and I read this book called Through the Shadowlands, which is about chronic fatigue syndrome and also about mold illness. I think I might talk about it a lot, but I really enjoyed it. But she started doing coffee enimas and when she started doing them, she was like, “This is totally nuts. I am embarrassed. I don’t want to tell anybody that I’m doing this.” And in her case, she ended up finding it really helpful, and I think it’s a part of her daily routine now.
Jane: But I mean, it’s like whatever works. That’s the other thing is that you know it’s kind of like, why does it work? What does it work? It doesn’t really matter, if it works. One thing, getting back to the endo ad that you saw, is that I’m pretty convinced that whatever is the root of my condition or might be the cure is not going to make anybody a lot of money. And so I think that exponentially reduces my chance of stumbling across a medical professional who has a passionate interest or solution for my situation. And that’s become clear to me for sure. I mean, I definitely eat healthy, I get a lot of rest, I run, I do yoga, I stay away from… whatever. But I think a lot of these cures, they’re not really a cure maybe for some of these chronic conditions as much as a lifestyle, and a hope that you put all the pieces together like in a puzzle and figure it out. But it might not be…
Brianne: Yeah, there’s a high degree of personalization. And I think about that a lot with stuff, even just dietary interventions which some people find so helpful. And I do too. I mean, it’s not everything by any means, but the way that I eat really impacts how I feel, and my energy levels, and my skin condition. And it’s bonkers to me that there isn’t even really a good explanation in the traditional medical community. Even dietary interventions still seem like a fringe idea. I think it depends who you see, but this won’t ever be researched properly, at least not in our current system, because there isn’t funding for it because nobody’s going to make money off of it. And so there are small scale studies, and there is the field of nutrition, but it is so influenced by corporate interests that it doesn’t really… it’s not about health outcomes, really.
Jane: Yeah, I actually connected my boyfriend with a nutritionist, and he was just having a sinus infection and I sent him to her. And I do the cooking in our house, so I was like, “I’m always up for a good, healthy diet plan.” And that actually helped me cure just incredible dizziness that I always had which made derealization a lot worse. And this nutritionist is an independent practitioner and we’re out near Boulder, Colorado, which is definitely a health-centered part of the country. So there is that for sure, that eating healthier just makes us healthier and makes you maybe better able to deal with certain symptoms. I don’t know if it cures them, but I’m all about that. And I do agree, I think where corporate interests don’t intersect with these situations there’s not gonna be a lot of interest. And I will go back to the woman piece of it, too. I just think that that’s already strike one when walking into a doctor’s office. I’m a woman and I had a really interesting experience where when I was dealing with the post-pneumonia stuff and I really was having trouble breathing, I went to see a doctor and I said, “I’m really having some respiratory issues.” And he said, “You need to get a mammogram, my mother died of breast cancer at age 40.”
Brianne: What?!
Jane: Right?
Brianne: Yeah. That’s bizarre.
Jane: But that’s… that’s a lot of the truth of this. And that was his answer, and that supports the mammogram center, and nothing against mammograms I bet they’re awesome, but it has nothing to do with your lungs as far as I know.
Brianne: Right, it’s that part. I mean I have not had that specific experience, but even when I’ve been recommended medication that had nothing to do with what I went in for. I mean when I was really sick with mold illness before I knew it was mold illness, and I had this bad skin pain. And eventually, my primary care physician was like, “Well if it gets worse, we can always put you on fibromyalgia medication, which would be antidepressants.” Like, I’m not taking antidepressants because my skin hurts. That doesn’t make any sense to me. Like it would be one thing if I had come in because I was depressed and I didn’t know why and everything else seemed to be working and I wanted something to help with my mental health baseline. But that wasn’t the situation, so… what? Yeah, there’s really something there with doctors.
Jane: Yeah. Anyway. So that’s the view from the Colorado Derealization Disorder Society. I don’t know if it’s a disorder. It’s a thing, they call it a disorder. I feel pretty well ordered. But I would love to figure this out someday and you know, get it to move on.
Brianne: Yeah, of course. And is there anything else? I think we’ve covered all my stuff. Is there anything else that has kind of pinged for you while we’ve been talking that occurs to you to share?
Jane: Yeah, I mean I guess the one thing, which is I was just very grateful to you because I feel like there are, I don’t know what the number is… thousands, millions of these stories of these people… of us. Like we’re actually an awesome community of people who are all working with individual things. But I think getting the word out and telling people that they’re not alone and that you’re the clearinghouse for this, I just think it’s terrific.
Brianne: Thank you! And yeah, I’m trying to stay focused on that going, “The audience for this is people experiencing chronic health concerns, diagnosed or undiagnosed.” I’m not… there’s plenty of work to be done around outward-facing stuff. But I think to start with I’m just connecting with people. Because there’s so much on the internet that isn’t helpful and I don’t want to be a health guide, I don’t care about that, I don’t care if anyone has unscientific explanations or weird treatments, I just want to say here’s what people are really doing and here’s how people are really living with whatever they are living with.
Jane: I have a yoga teacher who was a marine and he said something that – and it might be one of these things that other people have heard but I had never heard this – and he just said, “Everybody has something. Everybody is dealing with something.” And when it’s invisible, obviously we don’t see it. And I think when it’s invisible, we don’t see other people are more like us than we would know.
Brianne: Yeah, yeah, because you could pass somebody experiencing the exact same thing and you’d have no idea.
Jane: Exactly. We need to wear t shirts. It needs to be like color war in camp, like wearing the pinnies in elementary school sports. Yeah, we definitely need to… I don’t know what color derealization would be maybe like…
Brianne: Yeah, you could make a flag for yourself though, as a side project.
Jane: [laughs] Good, I need something to do, that would be awesome.
Brianne: Just a little extra diversion. It’s fine.
Jane: Because we’re not busy. But yeah, so thank you so much for this. I’m really excited about the project, and it’s just great. Even hearing a little bit about your story and reading your description, I look forward to it.
Brianne: Well, thank you so much for taking the time to talk to me!
Jane: Sure.
[guitar riff]
Thank you for listening to episode 12 of No End In Sight! Instead of my usual outro spiel, this episode is brought to you by Smile Songs, where you can buy art that sings. Check them out at SmileSongs.com, and enjoy this little ditty, Ur Sick It Sucks which I think many of you will relate to.
[woman singing over folky music]
One, two, three.
You’re sick, it sucks, the world should treat you better. If you’re hot, here’s a breeze. If you’re cold, a psychic sweater. And lots and lots of love from this little singing letter. You’re sick, it sucks, the world should treat you better.
Everybody! Ba dum bum bum…
You’re sick, it sucks, hey how is the food there? If you’re making all your food, props to your self-care. And if you’re craving pizza, let us know and we will send it there. You’re sick, it sucks, hey how is the food there?
Dada dum dum dum…
Oh it’s not fair how up comes trending down. Oh it’s not fair how well-done becomes rare. Oh it’s not fair how white coats like to push and prod and shake their heads and maybe nod.
Well, we’re on your side, front and back of this. We’re on your team, we’re gonna cheer you on from this. And if you’d like to scream, oh yeah, we’ll scream with you through this. It’s so wrong. Sing along!
[fiddle interlude]
You’re sick, it sucks, the world should treat you better. If you’re hot, here’s a breeze. If you’re cold, a psychic sweater. And lots and lots of love from this little singing letter. To your every cell, major organs, microbiome. To every test, until you’re happy, healthy, home.
Up with immunity, down with pus. Lot’s of love, to you from us.