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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 m