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

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

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?”

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

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,,

Brianne: [00:08:13] “This is

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,

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.”

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.”

Brianne: [00:12:25] Okay, so you definitely have scoliosis. I have a question though, since you have now mentioned

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.

Brianne: [00:13:25] Okay, but then you

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.

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.

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.

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.

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

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.

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.

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…

Drew: [00:21:43] Yeah.

Brianne: [00:21:44] False.

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

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.

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.

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.

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.

Brianne: [00:25:52] Yeah, notices

Drew: [00:25:54] Like, “Hmm,

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.”

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

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.”

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.

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.

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.

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

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.

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

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.

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.”

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.

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,

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

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.

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.

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.

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

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.

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,

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,

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?

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.

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.

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.

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.

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…

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.

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.”

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

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.”

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.

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

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.

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

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 terrible.

Drew: [01:02:29] Also I can’t drive and most of the time, I was very lucky that one of my four roommates was able to drive me to, and/or from work, or one of my coworkers could drop me off at home after, but not always, sometimes I did have to walk, and it was a two and a half mile walk,

Brianne: [01:02:56] Yeah.

Drew: [01:02:57] Which is not that bad, but is also pretty bad.

Brianne: [01:03:02] Yeah.

Drew: [01:03:03] Especially if you have chronic pain. Especially if you’ve just worked a seven hour shift on your feet the whole time.

Brianne: [01:03:13] Yeah.

Drew: [01:03:14] It was bad when that happened, which was not always. I’m foreshadowing something. So August comes around, I was not able to get my life together enough to have health insurance.

Brianne: [01:04:19] The

Drew: [01:04:20] Which was not great. So then I’m looking for apartments with someone who I barely know, and then he kind of flakes and I’m like, “Okay.

Brianne: [01:04:40] Yep

Drew: [01:04:42] But I found one. It’s too expensive. It’s beautiful, and I love living here, and I’ve lived here for a little over a year. And I have not missed my rent or been late on my rent once, by sheer miracles and force of will.

Brianne: [01:05:06] Yeah. Sometimes

Drew: [01:05:10] Yeah. Just completely by accident, it has worked out, but then all of a sudden I’m living alone. Which means that I don’t have roommates, which means that no one can really drive me to work.

Brianne: [01:05:24] Yeah.

Drew: [01:05:25] And I’m like, “Okay.” And by this point, I’ve sort of realized that I have chronic pain, and I’m starting to identify as someone with chronic pain in a vague way.

Brianne: [01:05:38] Yeah, had it been… this basically a year. Is it a year?

Drew: [01:05:45] Like six after.

Brianne: [01:05:47] from?

Drew: [01:05:49] Yeah. So I left college in February of 2018.

Brianne: [01:05:54] Okay. And then at that point, had you been sober for…

Drew: [01:05:57] For almost a year.

Brianne: [01:05:58] For almost a year at that point of 2018? And so then…

Drew: [01:06:02] I got a year of sobriety in April of 2018.

Brianne: [01:06:06] Okay.

Drew: [01:06:08] So I was already living… not in college, and then in October of 2018, I moved to this apartment.

Brianne: [01:06:18] Okay.

Drew: [01:06:18] And I started working at Starbucks.

Brianne: [01:06:20] Okay. So, just on that side of things, from the like, “Aha, there is pain here.” It’s 18 months in, about a year and a half. Okay.

Drew: [01:06:29] I moved here, and I’m like, “It’s six miles from here to work.”

Brianne: [01:06:36] That’s far.

Drew: [01:06:38] It’s far, but it’s not that far, in my brain.

Brianne: [01:06:43] I used to walk

Drew: [01:06:45] Yeah. And I’m like, “I…” and there is a bus, right? But it’s not Manhattan, you know? It’s not a dense metropolitan area where there is good public transport.

Brianne: [01:07:08] Yeah.

Drew: [01:07:08] Public transport exists, but it does take me longer to get from my apartment to work when I take the bus than it does when I walk.

Brianne: [01:07:22] Yeah.

Drew: [01:07:23] So at first I’m like, “I will take the bus whenever possible. And then when it’s not possible, I will walk.” But eventually I’m living in spoon debt, right? And even though in theory, I know that taking the bus will take less energy than walking. I needed to lie down for 20 more minutes, which means I can’t take the bus, which means I have to walk. So then I start walking to work. Sometimes walking home from work. Most of the time I would cave, and I would buy an Uber. So I’m walking to work, and it sucks. It’s so bad. And my manager keeps scheduling me so that I close every Sunday night, and Sunday night is when you clean the whole store after closing, a deep clean, and you’re there until 11:30 PM. And I’m like, “This is so bad. This is so And eventually I just start taking Ubers to and from work most of the time, but I live kind of… not exactly in the city that I live close to. So sometimes I’m in my apartment, and there are just no Ubers so I have to walk into town.

Brianne: [01:09:10] Yeah.

Drew: [01:09:11] And then eventually, like, sometimes there’s an Uber, but not always.

Brianne: [01:09:15] Yeah.

Drew: [01:09:16] So it’s just a whole thing. And then sometimes I have to work these crazy early or these ridiculous early morning shifts where I have to leave my apartment at like three in the morning to get there on time. So it’s bad. It’s just bad, but I’m like, “I have to stay here because this is the only place where I can work part-time and still get health insurance.” Which is so bad. That’s a really upsetting sentence, so eventually, I decrease my availability and I’m like, “I just can’t close on Sundays. I just can’t. That’s just the case. I can’t close on Sundays. I also just can’t work before, like noon.” And my boss, isn’t thrilled about it, but she’s like, “Okay, whatever.” And I’m taking Ubers to and from work because I’m just so exhausted, and I’m losing money

Brianne: [01:10:25] Yeah, the cost of transportation is basically eating up the paycheck. Yeah.

Drew: [01:10:31] And I’m making like $200 a week, and it’s pathetic. And then it’s March of 2019, or no, sorry. This was all in 2019.

Brianne: [01:10:51] Okay.

Drew: [01:10:52] Then it’s March of 2020,

Brianne: [01:10:55] Okay.

Drew: [01:10:57] And all of a sudden I’m eligible for health insurance. So I have health insurance, and I make appointments with doctors. I make an appointment with a new primary care doctor, and I see her in person, once.

Brianne: [01:11:22] Right. March, 2020

Drew: [01:11:24] March of 2020, and then it’s a pandemic then I’m like, “Oh, okay.” Another… I had one other in-person appointment that was to get a birth control implant in my arm because by that point, so in… okay. So I have Polaroids with dates behind me.

Brianne: [01:11:50] It’s your calendar!

Drew: [01:11:52] Yeah, my calendar of major life events. So February of 2019 was when I was no longer going to school.

Brianne: [01:12:01] Okay.

Drew: [01:12:03] I got sober in 2018. I got lost.

Brianne: [01:12:06] You’re talking about the implant.

Drew: [01:12:08] Yes. Okay. So the year that I stopped going to school or that academic year I also started taking hormones. I started taking testosterone, and my freshman year of college, I had started taking birth control.

Brianne: [01:12:27] Okay.

Drew: [01:12:27] I like pretty much stopped having periods, which was such a relief because my periods were so painful and also I’m trans, so periods are awful when you’re trans.

Brianne: [01:12:41] Yeah. Were you, were you on, so were you on a pill then?

Drew: [01:12:44] Yeah, it was on the pill, but I was on a continuous dose, so I just didn’t take the placebo week.

Brianne: [01:12:52] Yeah.

Drew: [01:12:52] Oh, also when I started birth control and when I started college, I gained a little bit of weight. So when I first went home from college, my mom asked me if I was pregnant.

Brianne: [01:13:07] “Thanks. Thanks. Thanks. Thanks.”

Drew: [01:13:09] Which was really fun. So that’s just a little side note.

Brianne: [01:13:14] In the mix of all of it.

Drew: [01:13:16] Yeah.

Brianne: [01:13:17] So you were on the pill, and then you were talking about… you said you tried T, and then later…

Drew: [01:13:23] When I first started taking the pill, I… that was the first time that I had seen a doctor, as an adult, and it was probably the best doctor’s appointment I had ever had because I had previously been seeing my pediatrician who was fine, but

Brianne: [01:14:03] Yeah,

Drew: [01:14:04] But if you ask me that question… also, my mom is here. Like, “No, leave me alone.”

Brianne: [01:14:11] Yeah that

Drew: [01:14:19] So I see this doctor or this nurse practitioner at my college’s wellness center. And she’s great. And she’s explaining things to me and she’s like, “We don’t have to do a pelvic exam to start birth control if you don’t want to. But if you do want to, we can just do one.” And I’m like, “No, I don’t want that,

Brianne: [01:14:43] Yeah.

Drew: [01:14:44] And then she like does a breast exam and she’s like talking to me through the whole thing and it’s just very comfortable, and she’s very open with me about things and it’s just… it was great.

Brianne: [01:14:58] you’re like, “This is informed consent. We could do… we could just always do this.”

Drew: [01:15:03] Yeah. And I told her that, later I went back to the health center for whatever, some other thing.

Brianne: [01:15:31] Yeah. You’re like, “I know that it’s sad, but I’m used to it being sad. I’m just trying to tell you the good part.”

Drew: [01:15:39] Yeah. And then when I went to the psychiatric hospital… for the first time, because in New York, when you go to a doctor, any doctor, they ask you if you’re in pain, which is not something that doctors do in Florida, or at least not something that my pediatrician did they just ask you, like, “Are you in any pain right now?” And I was like, “Yes.”

Brianne: [01:16:06] “There’s some pain.”

Drew: [01:16:08] “But, isn’t that… isn’t that the way things are?” So I sort of have that light bulb moment and that’s sort of the pieces of how I eventually came to identify as someone with chronic pain. So then I got my birth control implant, and then I can’t see any doctors in person, but I… so I see my new primary care doctor. And I’m like, “I…” when I was working at Starbucks, one of my coworkers had fibromyalgia, and we would talk about our life experience and she was like, “You have fibromyalgia.” And I was like, “Hmm.”

Brianne: [01:16:59] “Interesting.”

Drew: [01:17:01] “Maybe maybe.”

Brianne: [01:17:02] You’re like, “What

Drew: [01:17:08] Yeah. So we start talking and eventually I’m like, “Oh, you’re right. I have fibromyalgia.”

Brianne: [01:17:34] As much as that as ever a binary thing.

Drew: [01:17:36] Yeah.

Brianne: [01:18:02] “That’s not what legs are meant to do.”

Drew: [01:18:04] “Legs shouldn’t…”

Brianne: [01:18:04] It should already

Drew: [01:18:07] Yeah, “There should be blood in there.”

Brianne: [01:18:09] Allegedly,

Drew: [01:18:12] And I’m like, “What?”

Brianne: [01:18:17] This is news.

Drew: [01:18:18] Yeah. Also at some point, during one of his breaks, he had come over, and another one of our friends was here. We had been doing this puzzle, a jigsaw puzzle on the floor. And I was in so much pain. I kept having to take breaks and lie down in my bed cause I live in a studio apartment.

Brianne: [01:19:24] There’s a pattern here to the feedback that I’m getting about whether or not my body experience is typical,

Drew: [01:19:30] Yeah. And then also at some point, I went to work one day, and I had woken up in the middle of the night with pins and needles in my legs. And I went to work and I’m working my shift, and I still have pins and needles. And I complained to my coworker. I’m like, “I’ve had pins and needles in my legs for the past, like four hours.”

Brianne: [01:19:59] thing I also think that if you have a lot of weird body stuff for most of your life, you also develop a pretty strong,”Wwhat’s the doctor going to do?” reflex cause like, “Okay, I don’t think it’s good news, but what’s the doctor going to do? Tell me it’s weird? I already know it’s weird!” which… I recognize that’s not the most helpful approach, but I

Drew: [01:20:21] but it is what it

Brianne: [01:20:22] have a strong, strong dose of that.

Drew: [01:20:26] Absolutely.

Brianne: [01:20:27] I don’t know. My legs just feel bad. It’s neuropathy.

Drew: [01:20:31] Yeah. So I go to the doctor and I’m like, “Listen, I think I have fibromyalgia.” And she’s like, “Are you sure it’s not Lyme disease?” And I’m like, “I don’t go outside.

Brianne: [01:21:33] No, no. Yeah. Mine’s been checked so many times my thyroid and my iron I’m like, “I get it. I understand why we might want to monitor things, but I think that we can stop assuming this is the main culprit. This is not the main culprit.”

Drew: [01:21:46] So then I start… I see a new therapist for a minute, and she’s like, “It sounds like you have Lyme disease.” And I was like, “I know that it’s not Lyme disease. I promise you it’s not Lyme disease.” So then we do a second round of blood work. My doctor is like, “I still want to check you for Lyme disease.

Brianne: [01:22:25] And, as an aside, Lyme is a quagmire, and it’s good for people to ask in upstate New York, but it also has this other thing where there’s such a large swath of people who think everything is Lyme disease. And you’re like, “Okay. There is trouble… there’s a lot to this.” There’s trouble with the testing.

Drew: [01:22:52] Yeah. I have so much solidarity with people who do have Lyme disease. God bless them, but like, Oh my…. I don’t have Lyme disease.

Brianne: [01:23:02] Some people latch onto it, and just really want everything to be Lyme disease. And it does a lot of stuff. They all do.

Drew: [01:23:10] And it’s the same thing as when a doctor is like, “Oh, maybe it’s depression.”

Brianne: [01:23:16] Yeah.

Drew: [01:23:17] But anyway, so actually the two things that I wanted from this doctor was a referral to rheumatologists and a sleep study.

Brianne: [01:23:30] Great.

Drew: [01:23:31] But I needed a new psychiatrist anyway, so whatever.

Brianne: [01:23:34] It happens.

Drew: [01:23:34] I start seeing the psychiatrist, she’s great. And I come to her the first time and I’m like, “Listen, my doctor sent me to you…” Oh. So I had sort of given up on Lexapro a few months before I just kind of stopped taking it, which you’re not supposed to do, but.

Brianne: [01:23:54] But it was kind

Drew: [01:23:55] I did,

Brianne: [01:24:58] “Just a little off-label prescription?”

Drew: [01:25:01] Yeah. And she was like, “Yes, I was actually going to say the same thing.” And I was like, “Ah, cool, cool. So we’ll trick the insurance company.”

Brianne: [01:25:12] Great

Drew: [01:25:13] And Cymbalta actually did help with my depression a little so.

Brianne: [01:25:17] Bonus.

Drew: [01:25:20] And I can’t really tell if it’s helping with my pain or not. It’s hard to tell.

Brianne: [01:25:26] Yeah.

Drew: [01:25:27] Because also pretty much immediately after starting Cymbalta, I took a hiatus from work for a month because of COVID. And then I went back to work and then work was awful. And then everyone who worked for Starbucks kind of got offered a separation package, and I was like, “I am going to take this because I cannot work this job anymore.” And then I was on unemployment for a while, and now I work for you.

Brianne: [01:26:03] That’s true!

Drew: [01:26:04] Yeah. So yes. Right.

Brianne: [01:26:38] Right.

Drew: [01:26:40] I don’t think they’re working, but you know, it feels like I’m trying something

Brianne: [01:26:45] I understand.

Drew: [01:26:46] Which

Brianne: [01:27:06] Oh, that’s exciting. Is it tele-health, or is it in-person?

Drew: [01:27:12] It’s in person. Yeah.

Brianne: [01:27:15] And so, do you know what you’re going to ask them about yet? Do you… have you started your doctor game plan? As much as I hate that that’s even a question that I would ask somebody.

Drew: [01:27:26] I have a notes document on my phone, where I write down every time I think of another symptom that I have. And I can read it to you if you want. It’s a little bit long.

Brianne: [01:27:39] How about… what is the general structure of it?

Drew: [01:27:42] It’s not that structure d because it’s just whenever I think of something, but so… if we can return to my hypermobility for one second, because that’s kind of a thread that got lost.

Brianne: [01:27:55] Yeah. Well, especially because…. when we stopped talking about that, and then you were like, “I started to realize… chronic pain… started to think of it as fibro,” and if I hadn’t been asking a bunch of leading questions about your mobility, then that’s all we would know.

Drew: [01:28:11] So there’s the fibro aspect, right? And then I dive head first into chronic illness Twitter, and suddenly I’m reading a lot about EDS and I’m like, “Hmm, sounds like me.” And I had heard of EDS before a couple of times, but it was never presented as something that I might have. I had seen a picture on a Facebook group

Brianne: [01:29:42] It’s one of those many copaganda shows that really soured when one starts to pay attention to what… the world that belongs to. I understand.

Drew: [01:29:51] But what I liked about it was always the science parts. Because Emily Deschanel is just throwing out a bunch of words and then… I would watch bones and then pause it and look up the words that she was using and kind of look at what part of the body that is, and kind of learn things because I like to collect facts because I’m a formerly gifted kid.

Brianne: [01:30:24] Random, but sure.

Drew: [01:30:26] It was a required part of the dance curriculum.

Brianne: [01:30:29] Oh, interesting. I guess it makes sense from a kinesiology perspective.

Drew: [01:30:35] Yeah, so what we would do was we would draw diagrams of different parts of the body and then do exercises where we could sort of feel how that part of the body moved in our specific body.

Brianne: [01:30:54] Okay. Yeah.

Drew: [01:30:55] And in that class, I was friends with one person already. So we were always partners for different things where we would feel on each other’s bodies where things are. And she and I were both kind of like, “Holy shit. My skeleton is loose.”

Brianne: [01:31:12] Yeah.

Drew: [01:31:14] I’m just a loose bag of bones.

Brianne: [01:31:17] Yeah. One fact that has no other meaning, right?

Drew: [01:31:23] I remember talking about the SI joint and our teacher being like, “Yeah, you might not have any mobility there.” and then I felt mine and I was like, “Oh, that’s a lot. He’s loose.”

Brianne: [01:31:47] Yeah. You’re like, “If I pay attention to this joint, I, in fact, have quite a bit of mobility there. Am I

Drew: [01:31:52] doing well?”

Brianne: [01:32:16] Yeah, we can all find this one.

Drew: [01:32:18] We can all learn from this. And yeah. That was just an experience that I had filed away.

Brianne: [01:32:25] Yes. Under, “interesting, but otherwise meaningless,” right? Yeah.

Drew: [01:32:30] And then so this happened twice… with two different diseases that happened first with EDS and then with POTS, where Margo was like, “Hey, I think I have this disease. Can you help me figure it out?” And I was like, “Yeah. Okay.” So we would look at the diagnostic criteria together we were checking things off for him.

Brianne: [01:32:54] Yeah. You have a separate tally that you’re like, “Oh… don’t think about that.”

Drew: [01:33:00] And then afterwards he was like, “I don’t know why you think you don’t have EDS.” And I was like, “Actually…”

Brianne: [01:33:05] You’re like, “I might be rethinking that.”

Drew: [01:33:09] Yeah. And then with POTS, he was like… he knew that he had POTS and he posted somewhere, “Hey, if you don’t have POTS, I want you to take your heart rate lying down and then standing up because I just want to know what a normate body does.”

Brianne: [01:33:30] Yeah.

Drew: [01:33:30] And so I took mine, and I sent it to him and he was like, “Bro, you have POTS.”

Brianne: [01:33:38] That’s not… that’s not the typical one. This is the one that went up a lot. It’s not supposed to go up like that.

Drew: [01:33:46] Oh.

Brianne: [01:33:47] I guess I have POTS”

Drew: [01:34:22] “It’s kind of weird that I get hot flashes in the middle of the afternoon. I bet it’s just a side effect of my meds.”

Brianne: [01:34:30] Yeah. There’s always a little bit… or I’ve always been a little bit, which is… it’s the same freaking thing, but it’s like, “Oh, well I’ve always been a little bit hotter or colder than everybody else in the room,” which… big side-eye because that’s just temperature dysregulation, but nobody’s calling it that. Yes, POTS.

Drew: [01:34:51] So that’s kind of how that happened, and at this point I feel pretty comfortably self-diagnosed with all of these things with fibro, hypermobile EDS, and pots. I’m primarily seeing a doctor because I want to know if there’s anything that they’re gonna recommend. I’m pretty much managing things on my own. Like for POTS, I’m drinking a lot of salt water and Gatorade.

Brianne: [01:35:24] This is my giant water bottle that’s the same size as my head that somebody, I forget who, but somebody online… somebody on Twitter recommended it at one point, and was like, “I drank out of a giant bottle like this.” I was like, “Great. I’m gonna buy one and I’m gonna drink three of those a day.

Drew: [01:35:37] Exactly. And for the EDS, I made finger braces for myself because I was like, “This is something that could easily just be done.” And those have been really helpful for when I’m typing or when I’m having a day where I know I’m going to do a lot of grabbing of objects. Something scary that happened at work that is still kind of unexplained by these three diagnoses is that I was holding someone’s iced matcha latte and all of a sudden my hand just

Brianne: [01:36:30] Is it… what does it… I understand what a muscle relaxant is, but how does that impact you? What do you find that it does?

Drew: [01:36:39] So when you go to a doctor and you’re like, “I have pain.” They’re like, “What kind of pain?” And the thing is I have muscle pain and joint pain and nerve pain.

Brianne: [01:36:51] Yeah.

Drew: [01:36:52] Which is all of them. I think, I don’t know.

Brianne: [01:36:56] Yeah.

Drew: [01:36:57] I have maybe experienced bone pain, but I don’t… I’m not really clear on what bone pain is.

Brianne: [01:37:03] Yeah.

Drew: [01:37:04] Cause I’ve never broken a bone,

Brianne: [01:37:08] Yeah.

Drew: [01:37:09] How that would feel.

Brianne: [01:37:10] Yeah. I don’t have any insight. I understand what you’re saying.

Drew: [01:37:14] So she was like, “Well, if you have muscle pain, let’s try a muscle relaxant.”

Brianne: [01:37:20] Yeah, “Let’s relax those muscles. See what happens.”

Drew: [01:37:23] Yeahm and we did, and it has helped with my muscle pain. But with EDS, the reason why your muscles are so tense is to sort of keep your joints in place

Brianne: [01:37:40] Right.

Drew: [01:37:41] So I do have to be a lot more careful. I haven’t dislocated anything yet. I definitely still do have subluxations

Brianne: [01:37:51] And once you started… once you learned what that was… what a subluxation was, which let’s explain again cause I feel like it’s when I explained a lot, probably over the last podcast, but it’s when your joint is not properly in alignment, but also is not necessarily fully dislocated. So everything in between being in the right place and being

Drew: [01:38:17] I just got hit in the eye… hit in the face with the ladybug.

Brianne: [01:38:20] Oh yeah. They love… I don’t know if… are you in upstate New York? Is that yeah. Yeah. Cause we’re having like a really warm couple of days, which is what the lady bugs like. After we had a snow storm last week. So it’s hot out today. Fun.

Drew: [01:38:34] But yeah, so my SI joint subluxes all the time. And so I recently, like last week, I think, bought an SI brace.

Brianne: [01:38:45] Mm.

Drew: [01:38:46] And that has been really helpful. I’m wearing it now. It’s really the only reason why I’m able to sit up right now. But yeah, so that’s sort of how I’m managing EDS.

Brianne: [01:39:15] Yeah.

Drew: [01:39:16] So I know to be careful of it.

Brianne: [01:39:19] Yeah. I think in that way, attention really helps. Given that so much of it is apparently just learning what safe range of motion is, and then staying inside of it voluntarily. Anything that can help you pay attention to your joints, I would think would be… obviously there are ways to hurt yourself, but there’s plenty in between.

Drew: [01:39:41] And I still have pain every day. I don’t know if the Cymbalta is helping, but it’s certainly not hurting me. It’s not making it worse. I rest a lot. A couple of days ago, I had to go into the city with one of my friends cause he had a dentist appointment, He had a dentist appointment, and it’s a long drive.

Brianne: [01:41:04] Yeah.

Drew: [01:41:04] You

Brianne: [01:41:07] Yeah, there’s a big difference between occasionally, honestly voluntarily deciding to take the hit, and never being able to recover because you’re stuck in the grind of living at a spoon deficit, like you said earlier, which is so easy

Drew: [01:41:22] to do.

Brianne: [01:42:00] Yeah. Yeah. Cause you could feel it when you’re like, “Oh, I’m working from a deficit. It’s like carving out of myself for everything that I do.” Compared to… it turns out that it is true that if you wait long enough and can figure out kind of all of the things that very occasionally a lot of people describe being able to…

Drew: [01:42:32] It’s hard.

Brianne: [01:42:33] …hard.

Drew: [01:42:35] And then you have a good day or even a good moment. And you’re like, “I have to do all the things that I haven’t done.”

Brianne: [01:42:45] Yeah.

Drew: [01:42:46] And then you accidentally overshoot how many spoons you have and then you’re back to where you were or worse. It’s really hard.

Brianne: [01:42:56] Yeah, it is. Yeah. I have a related question since you are just looking into POTS and EDS and this is… okay. Potentially meaty question, and if the answer is no, then that’s fine. But it’s have you looked at mast cell stuff at all? Just because it turns out that there’s such a strong overlap, but I understand that one of the reasons it’s complicated is that it usually involves diet, which is… getting into it sucks.

Drew: [01:43:29] I have thought about it very tentatively because I have a lot of the symptoms of mast cell, but when it comes to actually accepting that one has mast cell, let’s say, those are lifestyle changes that I think would be psychologically a lot harder for me. Food is already really loaded for me. You know, I eventually… I guess, quote unquote recovered from bulemia, but you know, that’s not something that ever really goes away.

Brianne: [01:44:18] Yeah. It’s it’s there.

Drew: [01:44:23] And I know that a lot of people, even just with fibromyalgia benefit from, for example, cutting out gluten. I don’t really feel comfortable like making dietary changes, just because I don’t always really have a choice of what I eat anyway.

Brianne: [01:44:42] Yeah.

Drew: [01:44:42] You know, I… the way that my brain works is that I don’t get hungry,

Brianne: [01:45:12] Yeah.

Drew: [01:45:14] There are foods that feel safe right now that maybe won’t in an hour, so I have to eat it right now. So I just am nervous about putting any restrictions on that, you know?

Brianne: [01:45:28] It’s

Drew: [01:45:30] Yeah, exactly.

Brianne: [01:45:32] Maybe it will turn out to be relevant, but now is not the time to look behind this door because it’s going to be a whole thing.

Drew: [01:45:39] Exactly. When I first got sober, a lot of people told me like, “Oh, in your first year of sobriety, don’t quit smoking.” I was like, “Yeah, that makes sense.” If you’re trying to stop drinking, you’re not going to try to stop smoking cigarettes at the same time. That’s too many things.

Brianne: [01:46:03] It’s too many things.

Drew: [01:46:05] Right now I’m trying to limit activity,

Brianne: [01:46:14] No, especially not from just… there’s so much energy that goes into complicated eating. It’s such a mess.

Drew: [01:46:25] It’s possible that at some point in my life, I will feel ready to maybe consider like, “Oh, maybe I have mast cell stuff going on.” But as of right now, that’s just not something that I can look at.

Brianne: [01:46:38] It sounds like it’s also not the biggest fire cause it’s the kind of thing that… when it’s the biggest fire, you would know because we know there’s this like section of people who are just anaphylactic all the time, but lots of people who are living with mast cell stuff, it never manifest that way.

Drew: [01:46:55] Yeah. My mast cell stuff is I get rashes that are weird and that I can’t really explain.

Brianne: [01:47:03] Yeah.

Drew: [01:47:04] But I’ve never not been able to breathe.

Brianne: [01:47:08] Yeah. Yeah. And for that kind of stuff, I know I’m not the only one who talks about it this way, but I definitely think about it now. It’s harm reduction, just, yeah, “Which fire do I want to be putting out right now? Can I live with this weird rash? Yes. Do I want to live with it forever?

Drew: [01:48:21] Yeah, absolutely. So before the pandemic, every single doctor’s appointment that I made was something that I would have to get to physically. I had to take my body that is currently in my apartment, and somehow get it to it was doctor’s office. Right now. My primary care doctor is just up the road, so if I had to walk there, it would not be the end of the world. It would be the end of my week, but it wouldn’t kill me. But I sometimes would avoid making a doctor’s appointment, for example, because I knew that, trying to figure out how I was going to get there, if I was going to take the bus, if someone was going to drive me who was going to drive me, when was I going to ask them? How was I going to ask them? All of these things were just…

Brianne: [01:49:20] Yeah.

Drew: [01:49:21] That it just wasn’t worth it.

Brianne: [01:50:07] Yeah. Yeah. Everything is online which everyone has been talking about a lot, what a weird year. To really understate that.

Drew: [01:50:21] Something that’s weird about it for me is that 2020 has been… in my personal life and in my health life, the best year in recent memory. Because there are not actively outside forces that are damaging me.

Brianne: [01:50:43] Yeah.

Drew: [01:50:44] So

Brianne: [01:50:48] Yeah.

Drew: [01:50:49] I’m not the kind of person who thinks that everything happens for a reason or that you have to look on the bright side all the time.

Brianne: [01:52:09] Yeah.

Drew: [01:52:11] Learning about pacing myself, when I’m doing dishes makes me think more about like, “Oh, how am I pacing myself with my activism? How am I pacing myself with social justice work?” And that has been really helpful.

Brianne: [01:52:25] Something that I definitely saw from a random person on Twitter that I have not been able to scrub from my brain was someone who had a talk called “White urgency is violence.” Or a webinar or something. But that phrase specifically, I’m like, “Holy shit. That is so true and not a new, not a new idea, but just the phrasing has latched into my brain completely.”

Drew: [01:53:19] Yeah.

Brianne: [01:53:49] Yeah.

Drew: [01:53:50] “Maybe we didn’t do this right. Maybe Tonya Harding is not a terrible person.”

Brianne: [01:53:57] Yeah, I’ve… I actually haven’t listened to it, but I feel like there’s a McDonald’s hot coffee one. I think that’s the one that stands out to me.

Drew: [01:54:03] They … they’re talking about doing that one. They haven’t done it

Brianne: [01:54:06] That’s why. I’ve seen the documentary about it, but it’s come up… anyway. I know about it and I forget which ones people always suggest them.

Drew: [01:54:15] But it’s very useful in that… it just makes me feel… the people who make this podcast are not disabled, but it makes me feel more valid in the fact that my activism is always inherently going to be disabled.

Brianne: [01:54:48] Yeah.

Drew: [01:54:48] …do that, because I can’t read that many things in one day.

Brianne: [01:54:54] Right. It’s the whole cycle of engagement, et cetera.

Drew: [01:54:59] But what I can do is a couple of months after everyone has forgotten, be like, “Hey, remember this? Maybe we should circle back to it.

Brianne: [01:55:11] Do

Drew: [01:55:12] you think that maybe we were wrong about some things here? Let’s talk, let’s process.”

Brianne: [01:55:18] Yeah.

Drew: [01:55:19] “Hey, that was, that was a weird moment that we had culturally.”

Brianne: [01:55:23] All of 2020 for example. Yeah.

Drew: [01:55:27] “Let’s

Brianne: [01:55:29] It also… I think it’s interesting, in the disabled community, to see how many people end up being radicalized by the experience of getting sick. I think for similar reasons. When your life has to slow down, you take in information differently.

Drew: [01:56:36] Not that I can think of.

Brianne: [01:56:38] Great. Great. Well then thank you so much for talking to me today. I’m so excited to be talking to you face to face and to have you with No End in Sight, which people who are listening will know more about outside of the context of this interview by the time that they’re hearing this. So that’s fine.

Drew: [01:56:58] Yeah, I’m excited too.

Brianne: [01:57:00] Yay.

[guitar riff]

Drew: [01:57:06] Thank you for listening to episode 71 of No End in Sight. You can find me on Twitter @fibrofuckboy, and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram at @bennessb.

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