71 – Drew

New associate producer Drew Maar talks hypermobility, fibromyalgia, and borderline personality disorder (among many other things!).

Transcript

Brianne: [00:00:00] I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

[guitar riff]

Drew: [00:00:09] Hey, this is Drew Maar, your new associate producer.

Before we get started, we wanted to let you know that No End in Sight has a brand new newsletter. It’s full of updates about Twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters, and subscribe over at noendinsight.substack.com.

Today, you’ll be hearing my health story for the first time. Brianne interviewed me, and we got into hypermobility, fibromyalgia, mental health stuff including borderline personality disorder and alcoholism, and quite a few other things.

A few content notes for our conversation: We talk about eating disorders and restrictive dieting at around minute 7, minute 20, and then again at an hour and 45 minutes in. There’s a mention of weight gain and fatmisia at around an hour and 12 minutes in. We talk about queermisia at around minute 10, and there’s a mention of queer conversion therapy at minute 28. There’s talk of suicide and ideation at around the 25 and 50 minute marks. We talked quite a bit about alcohol and cannabis between the 20 and 40 minute marks. And there’s a mention of cocaine at around the 35 minute mark. And finally, there’s a mention of injections at around 40 minutes in.

Before we start, here’s our 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: [00:02:08] So I like to get started by asking you about your health as a kid.

Drew: [00:02:13] So my health as a kid… I thought of myself, and my family definitely thought of me as a healthy kid. Looking back, I can see that that was not really the case, so basically the earliest thing that I can think of, which is actually so,mething that I thought of last night that just clicked for me.

Brianne: [00:02:39] Yeah

Drew: [00:02:40] …is that I remember being in elementary school and I was talking to my best friend’s mom. The three of us were in the car. And I mentioned that my neck or that my back hurt. And she was like, “Oh, did you sleep funny last night?” And I was like, “I guess I did.” I didn’t really think that I had, but that just seemed like the correct answer.

Brianne: [00:03:15] Yeah, like, “This adult probably knows what causes pain, and they’re asking me about the pain cause, so that must be it.”

Drew: [00:03:23] Exactly. So yeah, I’ve always had chronic pain, as long as I can remember. And before realizing that that had happened last night, what I had thought of as the origin point was… so I was born in Venezuela, and I grew up in Miami. So when I was 12, my mother and I had gone back to Venezuela to visit family or something. And at some point we were at a mall, and I sort of noticed that my left trapezius, which is kind of the muscle between your shoulder and your neck, was hurting. So I put my hand there, and I felt a lump, like a huge lump. It was the size of a grape.

Brianne: [00:04:20] Okay. That you could feel with your fingers. I’m touching my traps, but I actually, incidentally, I have very tight traps also. I’m sure it’s a complete coincidence, but it means when I’m sitting up. I’m constantly kneading them. So people can’t see this, but I happen to be aggressively kneading my traps while you’re talking about yours. Go on. So you…

Drew: [00:04:40] Yes, I do this all the time.

Brianne: [00:04:42] Yeah.

Drew: [00:04:43] So I feel this lump, it’s the size of a grape and I’m like, “Fuck. What’s that? What’s that in my 12 year old body?” So I turned to my mom and I’m like, “Hey, I have a lump.” And my mom…

Brianne: [00:05:03] Not somewhere that I thought to look for them also.

Drew: [00:05:07] And my mom had cancer when I was like, one she had melanoma. So she was like, “Uhhh, okay.” So she feels the lump and she’s like, “Oh, you just have a muscle knot.”

Brianne: [00:05:20] Yeah.

Drew: [00:05:21] And I’m like, “Okay?”

Brianne: [00:05:24] “Are they supposed to be like that?”

Drew: [00:05:26] “Are they supposed to be that big?” And she’s like, “I mean, yeah, it’s kind of a crazy muscle knot, but it’s kind of a very large muscle knot, but yeah, that’s a muscle knot, and it’s probably from sleeping on my mother’s very hard mattress. It’ll go away.” And I’m like, “Okay.” You know, because I’m 12.

Brianne: [00:05:51] Yeah. And why wouldn’t that be the case? Why wouldn’t that be how that works out? It’s incidental, it’ll go away. We don’t know where it came from. We’ll forget about it soon.

Drew: [00:06:00] Yeah. Exactly. So it never went away.

Brianne: [00:06:06] As it turns out…

Drew: [00:06:07] I mean the muscle knot itself does wax and wane. Right now, I don’t have it, but my left trapezius does hurt right now. And it has since I can remember.

Brianne: [00:06:19] Yeah. Yeah. It’s definitely been… not behaving like a happy muscle, even if maybe it’s not always as angry, something like that? Yeah. Okay. So muscle tightness, which okay… without getting into anything that either of us might know in the present, it’s really interesting to me ro look back at all this mechanical stuff that clearly nobody was ever paying attention to, or telling anybody to pay attention to. It wasn’t…. I don’t think… and I guess maybe this is changing, even younger people who are starting to get diagnosed now might get some information, but so many people are just in a lot of pain and everyone’s like, “Oh, a little bit of pain is normal.” And you’re like, “Okay, I guess is this what a little bit of pain is? Okay. Cool cool cool.”

Drew: [00:07:03] Yeah, exactly.

Brianne: [00:07:04] Sore muscles to start basically.

Drew: [00:07:07] So now to, backtrack a little bit, mental health is a huge part of my health story. I, when I was in the third grade, started restricting my eating, and I mean… it had to do with a lot of things, in the way that eating disorders always do. But I think a really big part of that was that I started doing ballet when I was five.

Brianne: [00:07:35] Okay.

Drew: [00:07:36] And I also am,, you know, a Latin American person growing up with all these white people and my body does not look the way that other people’s bodies look. I also remembered this last night out of nowhere, my grandmother, when I was still in elementary school, commented, in a very benign way, I guess, about my ass being really perky. And I was like, “Yeah. Okay.” That’s like…

Brianne: [00:08:13] “This is just a thing that I am now normalizing about how we talk or think about bodies.”

Drew: [00:08:18] Yeah. So my body… I’ve never been fat, and I think that that’s like an important thing to acknowledge because I do have the privilege of a thin person in certain ways. I don’t really struggle to find clothes that are my size, but my body was just never quite shaped the way that people wanted it to be shaped.

Brianne: [00:08:47] Yeah, ambiguous is probably the wrong word, but cumulative culture… environmental pressure that can come from kind of whatever… I mean, you just listed them, but the factors of… they kind of can play together.

Drew: [00:08:59] Exactly. And at some point in elementary school, I think this was in the third grade… so I’m also trans, but the girls in my class, of whom I was a part at that time, decided that they needed to teach me how to eat more nutritiously which was weird.

Brianne: [00:09:20] There’s a lot to unpack there.

Drew: [00:09:22] Yeah, so that’s happening, it’s the third grade. That’s a ridiculously young age to be developing an eating disorder. So I start skipping meals, in the fifth grade I start bingeing and purging. Also in the fifth grade, I start to feel depressed. So then yeah, after that middle school is a really difficult time for me as it is for many people.

Brianne: [00:09:49] It’s a terrible idea to put all of these very pubescent people into one isolated space with nobody younger or older. Yeah. But, not to minimize how much harm is done, because as it turns out, that can cause a lot of harm. Yeah.

Drew: [00:10:02] Yeah. So middle school was awful. I… my depression got worse. My eating disorder got worse, definitely. And right at the beginning of the seventh grade, I realized that I was queer. I was like, “Oh, I’m bisexual.” I come out pretty immediately cause I’m just like,”Yeah, whatever. This is just a thing I have just learned to word with which to describe myself.” So I tell my friends and they’re kind of weird about it. They don’t really want to talk to me anymore. And so then it’s just me, and I’m alone, and no one’s really talking to me. The following year, I told my mom that I was bisexual, and then she didn’t talk to me for like a month and it was just me and her living by ourselves. So that was really hard, I think probably… yeah, I think probably that was the year that I first asked my mom if I could go to therapy. And she said no. Because she had been to therapy a few times in the eighties and the nineties some of that was in Venezuela. Some of that was in Washington, DC. She spent the nineties in DC and her experience with therapy was that it either wasn’t helpful or it was actively harmful.

Brianne: [00:11:29] Which is a truth about many therapists. I mean, that’s… I have the worst kind of filter on this one. It’s one of the impossible things where therapy can be so bad if you have a bad therapist. I’m not agreeing with the parenting strategy. I just… the world is hard.

Drew: [00:11:50] Yeah, absolutely. And I really feel for her, it’s awful to have a bad therapist, which I later experienced.

Brianne: [00:11:57] Yeah.

Drew: [00:11:58] And also around the same time my school did scoliosis screenings, which is pretty common. And they were like, “Hey, we think you have scoliosis.” And I was like, “Okay, cool. All right.” And then also in the seventh grade, I started cheerleading. So I had to get a physical , and my doctor was like, “You have scoliosis.”

Brianne: [00:12:25] Okay, so you definitely have scoliosis. I have a question though, since you have now mentioned both cheerleading and ballet. Two… just, you know, I wouldn’t have known to ask this a couple of years ago, but two sports that typically attract… not even attract, scout for people who are very flexible. Did you show up flexible? Is that how you ended up in, or part of how you ended up in those sports?

Drew: [00:12:47] That is something that I just discovered in ballet, and also I did yoga as a kid, as a very small child. I started yoga when I was three.

Brianne: [00:13:00] Lots of flexible stuff going on.

Drew: [00:13:03] Yeah, so when I was three, I started yoga. When I was five, I started ballet. And then I did both of those until late elementary school. So until I was like 10, 11, 12, I don’t know exactly when elementary school ends, but…

Brianne: [00:13:19] Yeah, around then.

Drew: [00:13:20] Yeah. 10, 11, not 12, by 12 I wasn’t doing that anymore.

Brianne: [00:13:25] Okay, but then you got to cheerleading. So a different…

Drew: [00:13:28] So then seventh grade, I start cheerleading. I’m very bendy. I’m the only person who is a cheerleader who can do a split day one. I can do splits, and they’re like, “Wow. Yes. Good.” And I’m like, “Okay.”

Brianne: [00:13:47] This is a good sign and not a bad sign.

Drew: [00:13:49] Yeah. Also in elementary school they made us do the presidential physical fitness test. And I was so awful at all of them. I am not an athletic person, but the sit-and-reach, which is, for listeners, you put your feet up on this box thing, and then you push a metal slidey boy, and it measures how many inches past your feet you can push your hands, basically.

Brianne: [00:14:23] Yeah, so a hamstring… not just hamstring, but hamstring/whatever else unfolds your spine flexibility kind of thing. Yeah.

Drew: [00:14:31] I was just getting these ridiculously high scores.

Brianne: [00:14:37] Weirdly.

Drew: [00:14:38] Yeah. And I always kind of felt pretty good about that. I was like, “Oh yeah, this is, this is my one test that I do good on.: Because I also was labeled as academically gifted very early, so anything that was labeled a test was very high stakes for me. Emotionally.

Brianne: [00:15:04] Gotcha. Yeah.

Drew: [00:15:05] So yeah, I start cheerleading, and I do my physical, the doctor tells me that I have scoliosis. She also tells my mom because she’s there and she’s like, “You need to take your kid to a back doctor to just figure out the scoliosis, figure out if anything needs to be done. Get an x-ray.” You know, all of the scoliosis things.

Brianne: [00:15:32] Check it out.

Drew: [00:15:33] Yeah. And in the appointment, my mom is like, “Okay.” And I’m like, “Okay.” And my doctor also tells me that I have a slightly out of range BMI, that I have a slightly higher BMI than would be expected.

Brianne: [00:15:51] Right.

Drew: [00:15:52] And she tells my mom, “You might want to go to an endocrinologist, but it’s not really a big deal.”

Brianne: [00:15:59] Okay.

Drew: [00:15:59] And my mom’s like, “Okay.” So we got referred to the back doctor and the endocrinologist, and my mom makes the endocrinologist appointment right away. And, you know, I start going to that. And then a few months later, I kind of realized that we haven’t gone to the back doctor. And so I asked my mom about it and she’s like, “Oh, I don’t think you need that.” I’m like, “Alright.”

Brianne: [00:16:28] Okay. Okay.

Drew: [00:16:30] Okay.

Brianne: [00:16:32] Noted.

Drew: [00:16:33] Yeah and later she told me that it was because she was scared. My pediatrician had mentioned that one of the possibilities was that I would need to wear a back brace, and my mom knew that I wasn’t doing well socially in school. And she was like, “People are going to be ableist to my kid.”

Brianne: [00:16:53] Yeah.

Drew: [00:16:54] Which makes sense.

Brianne: [00:16:57] Yup.

Drew: [00:16:58] But also. Oof.

Brianne: [00:17:02] Yeah. It’s in there with… yeah, the… I completely understand the emotional instinct there. It’s… and I must… I think about this so much… about how parents have to constantly make judgment calls about this stuff, and I’m sure sometimes they’re right, that thing turned out not to be a big deal. And I don’t know. I have my own junk. I do not mean to be defending poor parent choices about kids’ health care, but now, being able to see what I can see now in terms of how medium-effective the healthcare system is, I have a lot more compassion for how difficult it must be to make decisions for a child. That’s all I had to say.

Drew: [00:17:48] I definitely have gone through many different stages of how I view my mom. As everyone does, I think , but at this point I’m in a place where I’m like, “Yeah, she made a series of ultimately not-great, but very understandable parenting decisions.”

Brianne: [00:18:11] Yeah.

Drew: [00:18:12] And I can’t say that in her place, I wouldn’t have done the same thing. I don’t know. If I had had her upbringing, maybe I would have.

Brianne: [00:18:23] Yeah. It’s so hard. One thing that I find really difficult about the, “in retrospect,” stuff is, given what was known by the medical community at the time and what common practices were at the time and what inputs I know that this person had… it’s not about excusing people, but it’s about just really looking back and being like, “Oh yeah, this is a quagmire.” I can, like you just said, I cannot in good faith say, “I would have navigated this better.” Whatever that might mean, but it’s hard. Yeah.

Drew: [00:18:53] So I started seeing the endocrinologist who puts me on a diet plan. She’s like, “Oh, we need to change how you’re eating carbs.” And I already have an eating disorder that I haven’t told anyone about, and that no one has noticed because I’m very good at lying. And so I don’t change anything about the way that I’m eating. And I don’t lose any weight, and I just lie to the endocrinologist and I tell her that I’ve made the changes that she wanted me to make. And she’s like, “Okay, weird that nothing is happening then”. So she keeps telling me that I need to eat fewer and fewer carbs and I’m like, “I’m not going to do that.”

Brianne: [00:19:45] Yeah. Were they… as an aside, if it’s an endo who’s managing that, and you were referred because of BMI, were they looking at PCOS or were they looking at insulin resistance?

Drew: [00:20:00] Yeah, so that’s important. They tested me for… they tested my hormone levels to check for PCOS. They tested my thyroid, and they also had me get a hand x-ray so that they could do a bone age to see if I was done growing,

Brianne: [00:20:21] Gotcha. Hmm.

Drew: [00:20:22] Which I was. Also important. Yeah, my bone age, I was like 12. At that point I had gotten my period the previous year and my bone age was like 16. They were like, “Yeah, you are done growing. There’s no more growing…”

Brianne: [00:20:38] Yeah.

Drew: [00:20:38] “that’s going to happen.” And the reason why that’s important is because when I was in elementary school, I was introduced to the term growing pains.

Brianne: [00:20:48] Yes. Famous.

Drew: [00:20:49] I would go to the nurse and I would tell her my calves hurt or whatever. And she would say, “Oh, you’re having growing pains.” And then I went home. And my mom was like, “Oh, how was school today?” And I was like, “Well, my legs hurt. But I went to the nurse and she told me it was growing pains.” She was like, “Okay.”

Brianne: [00:21:10] Fair enough. I really… not that I don’t know who would have the resources to do this, but I really want to know if growing pains are real at this point. Are they real or is this… just literally everybody who has them in there probably hypermobile. Since that seems to

Drew: [00:21:25] I I have no idea.

Brianne: [00:21:27] Sorry, anybody who might be somehow listening to this episode without knowing anything about hypomobility from every other episode. That is such a… anecdotally strong correlation that I talked about on this one when I was like, “but I had growing pains and was not hypermobile ”

Drew: [00:21:43] Yeah.

Brianne: [00:21:44] False.

Drew: [00:21:44] So where are we?

Brianne: [00:21:47] Yeah. So your nurse told you, you had growing pains,

Drew: [00:21:50] Yes. Then my endocrinologist told me that I was done growing in the seventh grade, so by this point, I’ve already… I’ve been to Venezuela. I’ve had the shoulder pain. Okay. So then, we already went through the eighth grade where I came out to my mom. And then I also asked her if I could go to therapy, she said no. So then very early in the ninth grade I’m super suicidal, and I started drinking because literally one night I am very suicidal. I’m ready, pretty much. I realize, “Oh, a YouTube person that I follow posted a video tonight. I’m going to watch it.” It’s like four minutes. I watch it, and it makes me feel kind of a little bit better. And I’m like, “Ah, okay. So I don’t have to kill myself, but I still feel very bad. And like, what is the thing that culturally people do when they feel very bad? I guess they drink.” So I started drinking. At first I’m stealing my mom’s alcohol, then later I’m drinking Listerine because I’m drinking so much that my mom will notice.

Brianne: [00:23:14] By volume.

Drew: [00:23:15] Her alcohol is going missing, but you know, no one’s really thinking about how much mouthwash you’re going through.

Brianne: [00:23:26] Yeah, it would take a long time to notice. Cause the first… yeah, the first couple of times feel like a fluke or a bad memory or whatever. Not that the details of that matter, but…

Drew: [00:23:34] Yeah. But yeah, so that happens, and I’m sort of drinking to self-medicate my mental illness, but it also alleviates my pain, so that’s a thing. A couple of years later, I started smoking weed, and then I realized that that’s like amazing for my pain. So I’m smoking weed all the time. I’m just constantly high. I’m high at school. I’m high talking to my mom. I’m high at theater rehearsals, orchestra rehearsals. I did like a thousand school activities when I was a kid. I have no idea so. My school had an orchestra that rehearsed before school, so school started at 8. We had rehearsal at 7:30.

Brianne: [00:24:24] Ugh. Okay.

Drew: [00:24:26] So I would be up at 6:30 to get to orchestra rehearsal, or I would actually be up at like 6 so that I could start drinking.

Brianne: [00:24:34] Gotcha. Yeah.

Drew: [00:24:36] And so I would get to school at 7:30, and then sometimes if I was in a play that was starting the next week, I would be there until 8:00, 9:00 PM. Over 12 hour days.

Brianne: [00:24:51] Yeah, that hurts my body to think about now, but I was that busy at one time in my life. That’s a long day. Yeah.

Drew: [00:24:58] In the ninth grade I was still cheerleading and you know, sometimes football games wouldn’t get out until 10:00 PM.

Brianne: [00:25:05] Oh my God. I’m so old and/or sick, like 10:00 PM.

Drew: [00:25:11] Yeah. It’s… I can’t believe what we expect from teens because that was normal, you know? So anyway, I’m drinking, I’m high all the time. And the way that I can tell that I’m coming down is that my back will start to hurt. So, you know, I’ll be in class or whatever. My back starts hurting. I’m like, “Oh.” I get up, I go to the bathroom. And I’m vaping weed in the bathroom of my high school. And you know, eventually my mom catches on.

Brianne: [00:25:52] Yeah, notices something’s going on.

Drew: [00:25:54] Like, “Hmm, something’s up.” And her response is that I can’t do any more of my after-school activities.

Brianne: [00:26:06] That’s a classic. That’s a classic.

Drew: [00:26:09] Yeah. So that didn’t work.

Brianne: [00:26:13] Okay yes.

Drew: [00:26:13] Because that doesn’t work.

Brianne: [00:26:15] Does not really address the problem, no.

Drew: [00:26:19] start sneaking out. This is my senior year. I start sneaking out. I’m telling her that I’m going to the gym when I’m not… things like that. And eventually she catches me when I’ve snuck out and I’m like, “Okay, you’re mad at me already.” So this is the time. This is also how I came out to her in the eighth grade. “You’re mad at me already. So this is the time. Hi. Surprise! I’m trans.” And my mom is like, “Oh,

Brianne: [00:26:51] This conversation went a different direction than I expected.”

Drew: [00:26:55] Yeah. And then she’s like, “Okay that’s a lot for me to handle. I think you should go to therapy.” And I’m like, “Oh, that’s not what I was expecting, but okay. Yeah. Good.”

Brianne: [00:27:12] Everybody had a surprise here today. Really. Wow.

Drew: [00:27:17] No one thought that that conversation was going to go the way that it did, but it sure did go that way.

Brianne: [00:27:24] Yeah.

Drew: [00:27:27] So I’m a senior in high school. I’m finally seeing a therapist, and she sucks, but I don’t know that.

Brianne: [00:27:34] Yeah .

Drew: [00:27:35] Yeah. She’s seeing my mom and me, separately, about me.

Brianne: [00:27:43] Yep.

Drew: [00:27:44] So in my first appointment she was like, so there’s two ways that we can do this. The first way is we can do family therapy, and the second way is that I can see you and your mom separately. I was like, “I don’t want to have therapy where my mom is there.”

Brianne: [00:28:05] Yeah, that’s not the primary thing that needs to be untangled right now.

Drew: [00:28:10] Yeah. That’s not going to help.

Brianne: [00:28:11] Maybe sometime, but it’s not in here right now.

Drew: [00:28:17] I’m like, “Let’s just have you see my mom’s separately, and it’ll be fine.” And she’s like, “Okay.” A few weeks into that, my mother and I realized that the therapist is actively trying to turn us against each other and we’re like, “Ah, okay. So we’re not going to see Raquel anymore.” Yeah. Also there were these weird sessions where she would tell me about queer people, who she was seeing or who she had seen who wanted her to turn them straight. And she was like, “I don’t do that.” And I was like, “Okay, I don’t want that.”

Brianne: [00:29:00] Yeah. That should be the norm, I would say. That’s not something that you should… I understand, contextually, in the United States, that there are many places where it’s probably comforting to hear maybe, but it’s not necessary to lead with.

Drew: [00:29:18] Yeah.

Brianne: [00:29:18] Yeah.

Drew: [00:29:19] And then at some point, I told her about being suicidal and she was like, “Oh, you shouldn’t kill yourself because that would make me very upset.” I was like, “I’ve seen you three times in my entire life. I don’t really care how you would feel if I were to kill myself.”

Brianne: [00:29:44] And there’s something so gross in there that… one of the things about perhaps growing up not being really good at maintaining boundaries, perhaps because your body’s boundaries were constantly violated because nobody knew how to honor them because nobody could see what’s going on, just hypothetically as something that might happen with a lot of people in conjunction with other things. One of the things about needing to figure out how to be a person and maintain boundaries is not taking on other people’s bullshit emotional load. The idea that a stranger that you pay to help you with your mental health… the idea that feeling bad that you might let them down is a good way to be motivated is by itself, just… I know that people say that all the time, but especially a therapist that you barely have an investment in. It would be different if you had like a long-standing relationship where you had a context where you authentically cared about their feelings.

Drew: [00:30:51] Yeah, it was awful.

Brianne: [00:30:53] Yeah.

Drew: [00:30:57] So then my mom reaches out to the therapist who she liked the most when she was doing therapy in the nineties, in Washington, DC. And she’s like, “Hey, do you know any therapists in Miami?” And she says, “No, I live in Washington DC.”

Brianne: [00:31:21] Sure. Sure.

Drew: [00:31:23] “But I will give you some advice. And it is that you should see three therapists once, and whichever one you like the most of those is the one that you should see.”

Brianne: [00:31:36] Interview some people. Yeah.

Drew: [00:31:39] So she was like, “Okay. So I guess we’ll do that.” So we stopped seeing Raquel, and we find this other therapist, and we start seeing her, and we actually really like her. We don’t see a third person. She is still my therapist today.

Brianne: [00:32:01] Hey, that’s a win.

Drew: [00:32:03] Yeah. And she’s excellent. So when I was still living with my mom, she would kind of see us both together for the first 10 or 15 minutes of the session, and then my mom would leave and then I would get to have my therapy session. And she’s really great. She eventually tells me that I should see a psychiatrist. Which Raquel had recommended, but my mom had said no, and she eventually convinces my mom that I should see a psychiatrist. And then in April of 2017, I see a psychiatrist. She’s like, “You have depression and also social anxiety. Take Lexapro.”

Brianne: [00:32:54] Try something.

Drew: [00:32:55] Yeah, so she kind of hands me, Lexapro, you know, metaphorically, and I start taking it. The first week that I’m on it, it makes me feel sick as a dog, but after that, it’s pretty good. I stayed on Lexapro for a of years, maybe a year and a half. And it made me not suicidal, which at that point was enough.

Brianne: [00:33:29] It’s a step up.

Drew: [00:33:30] It took me from having constant intrusive thoughts about killing myself to that not being the case.

Brianne: [00:33:41] The ideation piece kind of. I know callin it a piece as if it exists in isolation is weird, but sometimes it can feel that way. Right? That one thing’s kind of gone, mostly.

Drew: [00:33:54] And you know, I was still carrying around the heaviness that accompanies being suicidal of like, [groans]

Brianne: [00:34:09] I feel like… I mean, I don’t… my line of experience with this stuff is pretty different, but just a low level rawness, to me at my hardest… whatever I want to call it, everything is raw. Everything is because you kind of hummed, and yeah, everything is on high alert and awful and overwhelming. And I guess it’s probably… in my case, I would think it’s probably because it’s related to amygdala hijacking. It’s like, “Oh, my entire nervous system is shot and that’s affecting my experience of life.” But I don’t know. Those are things that I would not have known 10 years ago to describe it that way. So.

Drew: [00:34:48] Yeah, but you got it. That’s that’s exactly it. So then I started college. I’m still drinking at this point. I’m still smoking weed. My first…

Brianne: [00:34:59] Did that change at all with the Lexapro? So not… obviously they’re managing different things, but did starting a medication change the way that you were self-medicating? Which I realize you might not know. No? Okay.

Drew: [00:35:10] Because at that point, theoretically, I was still self-medicating my senior year of high school, but it didn’t feel like I was self-medicating I was just drinking because that’s what I did. By the time I started an antidepressant, it didn’t occur to me, “Oh, maybe I should try to drink less or…”

Brianne: [00:35:36] It wasn’t like a careful titration of the… yeah… what was in the mix. Gotcha.

Drew: [00:35:41] Because it was just such a habit. It was just what I did. So I got to college. My first semester of college, I sort of dabble in a couple of other drugs which were also great for my pain, which I really try not to think about anymore, but, God, sometimes my face hurts in a particular way, and I’m like… my alcoholism is kind of like, “Mmm, I know that if I did some cocaine right now, that would stop immediately.”

Brianne: [00:36:15] I really would… I mean, I know why this doesn’t exist or I can guess why, but I would really love to see more public discussion about what is a huge problem, which is that… yeah, we don’t even have tools for thinking about this kind of stuff, I feel like. In the context where we’re all getting the message all the time, that we should fight through pain and mindfulness our way through pain and that pain relief itself, no matter the context is for weak people, maybe? I think all of these messages are out there. And then when that intersects with abusable substances and and the kinds of trade-offs that people have to make for whatever the space is between addiction and dependence. We don’t… there’s barely any resources out there for people who are living in chronic pain, who needed to manage this. It is frustrating.

Drew: [00:37:08] And also, to go back a little bit, my mom would get headaches a lot when I was a kid. For some periods, she would just be constantly on Tylenol because of her headaches. And then eventually she would be like, “No, like I’m taking too much Tylenol. I need to stop.” And then would just then for months be like, “Oh, I have a headache.” And I’d be like, “So take Tylenol.” And she’d be like, “No, no, I can’t.”

Brianne: [00:37:41] Right.

Drew: [00:37:42] And Then during those periods, also, if I said that I had a headache, she wouldn’t give me the Tylenol because she would be like, “No, I’m concerned about our Tylenol intake, and I’m worried that it’s gonna be bad.}

Brianne: [00:37:58] Yeah, “We’re using too much Tylenol.”

Drew: [00:38:01] Yeah. so that…

Brianne: [00:38:05] Yeah, so that gets in there with what our brains learn about pain management and what… I was going to say, “what are acceptable trade offs,” which isn’t really what I’m trying to say, bu, it’s really hard to set up in your head in addition to everything else about it. Yeah. So college.

Drew: [00:38:24] yeah, so I’m in college and dabbling with different drugs. And then my spring semester rolls around. It’s around spring break, I’m at the pharmacy one day picking up my antidepressant, and I see a tube of IcyHot, and I’m like, “Oh, I remember you.”

Brianne: [00:38:49] You’re for pain.

Drew: [00:38:51] Yeah. So my introduction to IcyHot was that my dad, who lives in Venezuela still, when he would come to visit the first thing that we would do, before we got home from the airport. He would be like, “Let’s stop at CVS. I need to get IcyHot, Bengay,” all of this stuff.

Brianne: [00:39:14] The good stuff.

Drew: [00:39:14] And he would just stock up.

Brianne: [00:39:16] Yeah.

Drew: [00:39:17] And then the whole house would smell of menthol from how much pain cream he was using.

Brianne: [00:39:26] Yeah.

Drew: [00:39:27] Because yeah… he has really bad back pain. I don’t know much about his health, but I know that at some point it was so bad that my mom had to do a trigger point injection for him, at home. And she was like… she tells this story all the time. She’s like, “Bro, injecting somebody is the grossest feeling ever.” Sorry… I just listened to your second health episode, and I know you have vagus nerve stuff.

Brianne: [00:40:01] Weirdly needles are fine.

Drew: [00:40:02] Okay.

Brianne: [00:40:03] Weirdly. It doesn’t make sense, but yeah, I believe it would be disgusting. I could not do it.

Drew: [00:40:10] So yeah, my dad has really bad back issues. My understanding of my father is of someone who is always at 45 degrees or less from the ground. I’ve seen him standing up. He is ambulant, but…

Brianne: [00:40:33] But you just… you’ve retained it. This is a feature. It’s a common thing.

Drew: [00:40:38] Yeah. He is a man who reclines. And he is also a man who falls asleep all the time.

Brianne: [00:40:45] Hm. Interesting.

Drew: [00:40:47] Almost like he maybe has some fatigue.

Brianne: [00:40:50] Something might be going on there, who could know?

Drew: [00:40:54] Maybe he’s tired.

Brianne: [00:40:57] Yeah, not everyone falls asleep all the time, I’ve heard.

Drew: [00:41:01] Yeah. So they tell me. So they tell me, not everyone falls asleep in the car, but that is something that my father and I do have in common.

Brianne: [00:41:11] Yeah.

Drew: [00:41:12] So I see this tube of IcyHot, and I’m like, “Hmm, I deserve it. I’m having a hard time.” My freshman year of college was a disaster for reasons that I’m not really going to get into, but I was like, “I’m having a really bad time. I deserve to buy this tube of IcyHot, and carry it around in my backpack.” So I did, and I throw it in my backpack. And I was a college student, so I had my backpack with me all the time. Every so often I would remember that I had icy hot in my backpack and be like, “Oh my God.”

Brianne: [00:41:50] My day is about to get so much better.

Drew: [00:41:52] Yeah. I remember one night I was very drunk at a party and I was standing in a doorway with the door frame between my shoulder blades. And I was kind of leaning on it to rub out the knots in my muscles.

Brianne: [00:42:17] Yeah.

Drew: [00:42:17] My friend turned to me and was like, “My dad does that.” And also from a very young age, I would stretch a lot. I’m constantly stretching, constantly contorting, that sort of thing. And my mom would always think it was really weird. And she mentioned that me and my dad were both probably part ostrich because our fingers bend back.

Brianne: [00:42:45] Yeah, of course!

Drew: [00:42:46] Which is funny.

Brianne: [00:42:47] That must be it!

Drew: [00:42:50] Yeah. So then my friend turns to me, she’s like, “My dad does that.” I’m like, “Dads, you say?” And I suddenly remember that I have IcyHot in my backpack and I just cover my whole body in IcyHot.

Brianne: [00:43:02] Yes.

Drew: [00:43:03] And it felt amazing. And so anyway, probably a few weeks after that incident I got sober.

Brianne: [00:43:13] Okay. So this is late your first year of

Drew: [00:43:16] college. My first year of college. Yeah. A month, two months before my 19th birthday.

Brianne: [00:43:23] Okay.

Drew: [00:43:26] And I got involved in 12 step work and going to meetings and stuff like that. One of my best friends from college was already doing that, so we went together, and it was very good. And I’ve been sober ever since, and I’m very, very lucky that that is the case because I do not work a perfect program all the time by any means. Nobody does, but I think it’s especially hard when you’re chronically ill to constantly be engaging with… I don’t know. I feel like 12 step work and the 12 step community is very… you need to be able to use your brain at least a little bit, and there are days when I just can’t, and you know, there have been times… so now in COVID meetings are all online. And there’ve been times in the past few months where I log on to a meeting. And then roll over and fall asleep, immediately.

Brianne: [00:44:31] Yeah.

Drew: [00:44:33] And I’m like, “I don’t know. Does that count? Did I go to a meeting today?”

Brianne: [00:44:37] Yeah. “I took the action, which…”

Drew: [00:44:39] yeah,

Brianne: [00:44:40] “is something and I fell asleep, which is a different something.”

Drew: [00:44:46] Yeah. So it’s hard. But yeah. So I got sober which meant that I no longer had any pain management.

Brianne: [00:44:56] Right. All of your kind of incidental pain management tools are gone. Well, except for your IcyHot, but the major ones.

Drew: [00:45:04] Yeah. And I’m like, “Oh, Oh, hello body. It’s been a while since we’ve met, it’s been like four years. Oh, dear God.”

Brianne: [00:45:19] There’s a lot going on.

Drew: [00:45:21] “This is bad. This is very, very bad.” So I go home for the summer, and I’m in bed the whole time. Except for when I’m going to a meeting or something like that.

Brianne: [00:45:41] A question that I have about that experience, which I’m totally projecting onto right now, is did you… do you feel like you had very much awareness about what was physically… about where the sort of permeable boundaries were between physical health and mental health? I’m asking because it has been my experience that, before I kind of knew what was going on, I had a number of times when I maybe spend a month lying down. And I think I… I didn’t know what to call it, but I definitely always was filing it under mental health. And now in retrospect, I’m like, “Oh, I think a lot of the mental health problems were just internalized ableism. And actually it was mostly a physical problem that I was hating myself for.” And I wonder, how was that for you? I guess.

Drew: [00:46:27] So growing up… as a teen the summers were very much time for me to lie down because like I said, I was just dancing as fast as I could during the school year. So I had always sort of chalked that up to depression. It was not something that my mother liked, either. She was like, “What are you doing? Do something, anything. Literally anything. Just do something.” And I was like, “I can’t.

Brianne: [00:46:59] Yeah.

Drew: [00:47:00] The summer between high school and college, I did have a job, but I was working at my high school library, cataloging these vinyl records. My band teacher had a vinyl record collection. I was a band kid.

Brianne: [00:47:18] Yeah.

Drew: [00:47:19] I ate lunch in my band teacher’s office. There was a bunch of us who did that.

Brianne: [00:47:24] Yeah.

Drew: [00:47:25] And he was like, “Hey, so we’re moving this record collection into the library. I bet you could get them to give you a job.” And I was like, “Yeah, probably.”

Brianne: [00:47:33] Yeah.

Drew: [00:47:33] So I talked to the librarian who had been my computer skills teacher when I was like eight. And I was like, “Hey, Ms. Long, I’ve known you for 10 years. Can I have a job please?” And she was like, “Yeah.”

Brianne: [00:47:48] “Sure thing.”

Drew: [00:47:49] So it was a sitting down job. And it was not even a sitting down and using your brain job, because that was when I discovered podcasts.

Brianne: [00:47:58] Yeah. You could very much do that.

Drew: [00:48:00] I would sit there, put stickers on, and just listen to podcasts.

Brianne: [00:48:04] Yeah.

Drew: [00:48:06] So it was super laid back, super easy, but even then, a couple months before the end of the summer, I was like, “I can’t do this anymore. I’m dying.” Yeah. No, I didn’t realize that it was a physical health thing.

Brianne: [00:48:23] And you’d been… it sounds like you… not, “you’d been lying down a lot,” but you kind of had a relationship to restful summers that didn’t make it seem like it was, by itself, a crisis.

Drew: [00:48:34] Yeah. I thought of myself as someone who would lie down for three months out of the year. And I was like, “This is normal for someone who has depression, probably.”

Brianne: [00:48:47] Yep.

Drew: [00:48:48] Right? That’s normal. That’s

Brianne: [00:48:49] what we are told about depression and how it manifests and what it does. I don’t have any strong

Drew: [00:48:54] feelings about that. “This is definitely very normal for someone who has depression, even when they’re taking medication and going to therapy every week.”

Brianne: [00:49:03] And yeah.

Drew: [00:49:05] Definitely.

Brianne: [00:49:06] Definitely.

Drew: [00:49:06] And also going to meetings every day. Where you got to talk about your feelings.

Brianne: [00:49:13] Yeah. Like genuinely emotionally engaged. One of the hallmarks of depression is… not necessarily complete emotional flatness, but if you have a mostly pretty rich emotional experience and you’re still spending a lot of time in bed, I don’t know… that should rule out depression.

Drew: [00:49:36] But it turned out that it wasn’t depression. I was just in a lot of pain.

Brianne: [00:49:42] Right. Which isn’t to say the depression wasn’t in the mix,

Drew: [00:49:45] but… Yeah. I was depressed. Sure. But I was just also in a lot of pain and that was why I was lying down.

Brianne: [00:49:54] Yeah. Yeah, yeah, yeah

Drew: [00:49:55] So I went back to college. My life kind of fell apart.

Brianne: [00:50:02] Yeah.

Drew: [00:50:03] For a variety of reasons, some of them health related. So, November of that year I had a psychiatric hospitalization because I was suicidal in a very serious way for the first time in many, many years.

Brianne: [00:50:28] And were you still taking the Lexapro then?

Drew: [00:50:30] I was.

Brianne: [00:50:31] Which had been helping, but everything else changed, obviously.

Drew: [00:50:34] Yeah. Well, my… I had a major life upheaval which triggered that.

Brianne: [00:50:39] Hmm.

Drew: [00:50:42] So I had a psychiatric hospitalization, and during that, my mother’s psychiatric health also took a really steep decline, worse than mine, but she didn’t go to the hospital. Hers was in a different direction though. Mine was, “I want to hurt myself and hers was, “I feel like I’m under attack.” Basically she started having psychosis which I also experience to a lesser degree, but you know, so far.

Brianne: [00:51:25] Okay.

Drew: [00:51:26] And she didn’t get any treatment for that, and she still hasn’t. And she’s still kind of there… It’s complicated, but how that affected me is that I haven’t been home since then because I haven’t been invited, and my psychiatric hospitalization happened right before Thanksgiving break.

Brianne: [00:51:54] Okay.

Drew: [00:51:55] So I was like, “All right, I’m on this college campus essentially by myself. I don’t like this.” One of my housemates had invited me and my other housemate to come to their Thanksgiving if we wanted to go, and one day into Thanksgiving break, we kind of looked at each other and we were like, “We have to go because otherwise, we’re going to die here.” Being on a college campus alone during Thanksgiving break is so awful.

Brianne: [00:52:31] I believe it.

Drew: [00:52:32] believe it Especially when you have just had this major life upheaval that then led to another major life upheaval that then led to another.

Brianne: [00:52:40] And there’s a lot to unpack about Thanksgiving, for sure. But the vibe around Thanksgiving time is that a lot of people are really into their own families in a way that is not always affirming if your family is not like that. Yeah.

Drew: [00:53:00] So something important that happened in the hospital is that my last day there, they went through my file with me and they were like, “Okay, here are the diagnoses that you came in with and the diagnoses were social phobia, and personality disorder, not otherwise specified.

Brianne: [00:53:23] Okay.

Drew: [00:53:23] And I was like, “Hang on a second. Nobody ever mentioned to me that I have a personality disorder, but I have kind of previously thought that I might have borderline personality disorder, but no one ever told me. So I…” So in high school there was a point where I was pretty much comfortably self-diagnosing with borderline.

Brianne: [00:53:56] Okay.

Drew: [00:53:59] But then one of my friends said something about self-diagnosis that was invalidating. I was like, “Hmm. Okay. No, nevermind, nevermind.”

Brianne: [00:54:09] “We’ll just cut that one off.”

Drew: [00:54:11] “We’re going to put that in a box and never think about it again.”

Brianne: [00:54:14] Yeah, sure, sure.

Drew: [00:54:16] They were like, “Oh yeah, you came in with this diagnosis.” And I was like, “No one told me.” They’re like, “Well you should talk to your doctor about it.” And they were like, “Here are the diagnoses that you’re leaving with. So we’ve gotten rid of the social phobia,” which I agree with. “And we’re putting your substance abuse stuff on your record and also PTSD.” And I was like, “Okay, cool, cool.” And they were like, “We would diagnose you with borderline, if you were a little bit older.”

Brianne: [00:54:54] Mm. Hmm.

Drew: [00:54:57] “But we’re giving… we’re keeping the personality disorder, not otherwise specified just because you’re 19, and things could change. And that it’s like, “I mean, that’s like weird, but okay.”

Brianne: [00:55:13] Yeah.

Drew: [00:55:14] So at that point I’m like, “Okay, so I have borderline. So I was right. All along.”

Brianne: [00:55:21] Yeah. Self-diagnosis discourse…

Drew: [00:55:25] Yeah. And so I go to my psychiatrist appointment, and I’m like, “Hello, dr. Flagmen. I have questions for you.”

Brianne: [00:55:35] Yeah. Yeah.

Drew: [00:55:37] He’s like, “Hey, what’s what’s up?” And I’m like, “So hi, did you diagnose me with a personality disorder and then not tell me?” And he was like, “Oh. Let me check my notes.” I’m like, “Did you… did you diagnose me with the personality disorder and then forget?”

Brianne: [00:56:04] Yeah, like what? Does that… I have a lot of questions about everything, but including the nature of some psych… the way that some psych diagnoses are managed. I don’t mean the validity of some psych diagnoses. I just mean the way that everyone and everything engages with them and how bizarre it can be sometimes, we’ll say.

Drew: [00:56:29] So he checks his notes and as it turns out, he did in fact, diagnose me with a personality disorder and then A.) Not tell me and B.) Forget.

Brianne: [00:56:46] I just… I have so many… there’s so many things where I’m like, “Okay, what an interesting situation. I wonder what that doctor was thinking?” And I can kind of be like, “Okay, well maybe they were thinking that they…” which, this is very patriarchal, but let’s accept that for a second, because that’s how medicine is. Like, “Maybe they’re thinking that they don’t want to burden this person.” Cause that’s what they always say, and maybe there is some case to me made for people who are minors about that in terms of focusing on coping mechanisms. There are a lot of maybes where I can sort of get a little bit closer to understanding, but at the end of the day, it’s like, “Okay, but are you trying to give me enough information to make better choices to care for myself? Or do you just want to observe me privately in your notes because you get paid to do that? What are we doing here?”

Drew: [00:57:39] And it actually is a pretty common practice, with borderline specifically, to diagnose someone and then not tell them.

Brianne: [00:57:48] I feel like I’ve also heard a parallel thing, which is to tell someone, but not write it down is another one that’s… which is kind of, I guess exactly what happened to you. I’ve heard other people have a similar story of, “They didn’t want… they told me that it will cause a lot of bias in my file, but I might want to know.” You’re like, “Okay, cool, cool, good system.”

Drew: [00:58:11] Yeah, so then he was like, “Yeah. So now that you know. Have you read the book, I Hate You, Don’t Leave Me?” And I was like, “No, but I’ve obviously heard of it because I thought I had borderline for all of high school, but then I didn’t think I was valid.”

Brianne: [00:58:32] Yeah. You’re like, “I know about it, but I just didn’t get into any of the resources because it wasn’t sure if they were for me or not.”

Drew: [00:58:39] “I literally have the PDF saved on my computer, but since nobody told me that I was valid, I thought that I shouldn’t read it because maybe I wasn’t valid.”

Brianne: [00:58:52] And that’s an extremely relatable fair at also so ridiculous to be like, “I didn’t use the resource that I had because I thought I wasn’t allowed to.”

Drew: [00:59:04] Yeah. Okay. So when I self diagnosed with borderline, it’s actually a really funny story. It was because somebody had shared a meme about borderline and I was like, “Oh, this is… yeah. Fuck. Yeah.” So much so that I went to the page and then followed the page. And then I started like joining a bunch of support groups for people with borderline, and then when my friend said that thing about self-diagnosis that made me feel like I wasn’t valid, I was like, “I have to leave all of these groups. I’ve been taking up space that isn’t for me, I have to unfollow all of these pages. I’m so sorry that I ruined everything.”

Brianne: [00:59:48] Yeah. Yeah, yeah,

Drew: [00:59:49] Which is a very borderline response to have.

Brianne: [00:59:51] I was going to say, which sounds like one, very relatable and two, a lot like black and white thinking.

Drew: [00:59:57] Yeah. “Oh, no. I can’t believe that I’m bad.”

Brianne: [01:00:03] Yeah, ” Haha! Joke’s on me. ”

Drew: [01:00:07] Anyway, my life was very hectic at that point, so I didn’t end up reading I Hate You, Don’t Leave Me until a few months ago. I did read it, and yeah. Yeah. So… Very soon after that, I abruptly had to leave school for a reason that was not health-related, and I couldn’t go home. So I was going to school in upstate New York one of my friends who… you’re actually mutuals with on Twitter, Margo. Margo is from the area and he knew some people who had an apartment where they were willing to take me in. And I moved there, and I proceeded to not do anything at all for a month. And then I got a job in food service.

Brianne: [01:01:08] I just flashed back to work in food service said how extremely painful it was.

Drew: [01:01:13] Yeah. I got a job at a Barnes and Noble cafe, which very bad, and I start working there. Also hanging over me is the fact that because I’m no longer a student, in August my health insurance is going to disappear and I’m like, “Okay, no, it’s fine. I’ll just eventually get on my mom’s health insurance. or, you know, I’ll get on the New York state health insurance, which is subsidized and would be free. I’ll figure something out.” I’m working at Barnes and noble cafe, and it sucks so much, and it hurts so much.

Brianne: [01:02:07] I can’t believe in retrospect, any job that’s basically on your feet all the time. I know that there are… again, there’s a lot to say about labor practices in general, but specifically when you’re in chronic pain, and you’re upright all day, and you don’t really have the lens to fully interpret or handle it, it’s terribl