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Brianne talks hypermobility, mast cell disorders, and recontextualizing old experiences using new frameworks.

Transcript

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

Okay. Well, I’m really excited to finally be sharing a relatively recent interview. Today, No End In Sight’s brand new associate producer, Drew Maar is interviewing me about all of my health updates from this year. Plus lots of semi-related rambling and a bit about what to expect from upcoming podcast episodes. You’ll get to know more about Drew in episode 71, and you can expect to hear his voice more in future episodes as he takes on more production work.

In this episode we talk a lot about hypermobility, mast cell disorders, PTSD, and the ongoing work of recontextualization as you find new frameworks for interpreting old symptoms. We also talk a bit about my TEDx talk, my storytelling anthology, and the #NEISVoid hashtag on twitter so I’ll include links to all of those in the show notes.

We’re also refining how we do content notes for the show so you might see a few iterations of that before we settle on a style. If you have any feedback about what’s most helpful, we’d love to hear it!

Today for content notes, you can expect conversations about alcohol at about 22 minutes, in 26 to 32 minutes, and 49 minutes. I start talking about a bike accident around 28 minutes, then that gets a bit gruesome in terms of wound description around the 30-minute mark. And shortly after that there was a description of violence and secondary trauma that continues to the 35-minute mark. Then from about 35 to 40 minutes, there was significant discussion about parent loss. We also talked briefly about restricted diets at 53 minutes in, and then about COVID and lockdown at about the 60 minute mark.

Before we start, here’s my disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: [00:02:02 ] Okay, great. Do you want to ask me about my health, and then whatever questions you have?

Drew: [00:02:09 ] So how was your health as a kid?

Brianne: [00:02:12 ] Great question, Drew. Thank you. I have thought about this a lot, and I think I talked about it a lot in episode one, but not in episode 50, but I was not a very healthy kid, but I didn’t really register that at the time. And I think there’s a lot of reasons why. So, first of all, I was exhausted all the time in elementary school.
My mom used to dress me in bed, which is not normal. I don’t think for a prepubescent kid to not have that much energy. And I also was probably in a lot of pain. So when I was in third grade, my teacher called home to say, “Brianne keeps saying that she has a stomach ache or a headache, almost every day.
What’s up with that? Is something going on?” And this is how the split happens. So both my parents were psychologists, which is not typical, probably for a lot of people. And they split up when I was pretty young when I was two or three years old. And then my stepmom was a social worker, and then my stepdad was in sales.
So he’s on his own trajectory, but three of my four parents were mental health professionals, which is not normal.

Drew: [00:03:20 ] Yeah.

Brianne: [00:03:20 ] So when I was in third grade and I was having a really hard time, I was also miserable. I came home crying from school almost every day. It was just… a lot of things weren’t going well,
and also I think I was pretty uncomfortable. And at that time is when they do standardized testing in Ontario, which is where I grew up in Canada.

Drew: [00:03:38 ] Right.

Brianne: [00:03:38 ] And according to Canadian achievement test results… that’s what it’s called the CAT test. They would use that as a screening tool for special education.
Okay.
Including gifted.
And so I think it’s kind of a bell curve situation, even though obviously there’s a lot of bias that goes into testing and the construction of that bell curve. But they’re like, “Okay, kids who performed in a certain percentile on this standardized test get pulled out for more follow-up testing,” Including a lot of tests that I now know are used to test for other types of neurodivergence, like Raven’s Matrices and other stuff that eight year olds can do to test… I don’t know what they call it, but it’s probably like, “Innate intelligence,” which I put in air quotes because it’s a horribly flawed concept, but it’s checking for how your brain works, basically.

Drew: [00:04:23 ] Yeah.

Brianne: [00:04:24 ] So that was optional, but… gifted education… I know you know this, but gifted education is a type of special ed, but it’s not usually identified or talked about that way, probably to make it sound less stigmatized. And for a whole bunch of other reasons that maybe we talk about, maybe we don’t.
But anyway, so I went into gifted in fourth grade and this impacted, I think, a lot of things. It was a full-time program. It was one of four in my city. So…

Drew: [00:04:51 ] Okay.

Brianne: [00:04:52 ] It was like a normal… I don’t know why I’m using the word normal so much, but it was like 30 kids in a classroom. It felt like any other education, but all of the kids in this classroom were kids who had been flagged by standardized testing as being… at the time they would call it, “deemed gifted.” So you had an asterisk next to your name, but the reality is that probably most of those kids were neurodivergent and getting put into this new environment that has been specifically designed for kids whose brains quote, “work a different way,” but like, “in a good way,” again, quote, I think creates an interesting environment and for me, and I know a lot of other people feel this way.. I was a lot happier in school from fourth grade on, but I didn’t think critically about that very much. So that is one thing that I think played into it. And then there’s a couple other layers that I’m going to put into it that I didn’t talk about, I realize, in my last couple of episodes. So layer one is that I said both my parents were psychologists. And the reason that my dad is a psychologist or was a psychologist, is that he grew up… he was dyslexic, and he had ADHD and neither of those were diagnosed until he was in at least his twenties. So he went through high school… I think he started college and then dropped out and then my grandfather who I never met, it was his greatest regret that he hadn’t gone to college. And so as he was literally dying, and my dad was a college dropout, he was like, “No, son, I’ll be so proud of you. I want you to be happy, get your education,” kind of. Maybe I’m misrepresenting that. But…

Drew: [00:06:30 ] Woof.

Brianne: [00:06:30 ] Yeah, right? And so that’s the picture that I got from my dad, I don’t know how true it is.
And ultimately he did, and I think the diagnoses made a big difference. So basically my dad in the 70s and 80s, we’re talking about, so… this is really important, actually. My dad who had gone to boarding school for high school.

Drew: [00:06:48 ] Okay.

Brianne: [00:06:49 ] So he was… his grandfather had been pretty affluent, if that makes sense.
So my dad came from a pretty affluent family. He was living with undiagnosed disability, but one of the realities of having a lot of privilege is that you also sometimes get a lot of invisible accommodations.

Drew: [00:07:06 ] Right.

Brianne: [00:07:06 ] And so I know, going all the way back, that that was happening with my dad. He failed high school French, and they were just like, “Please, we will give you a passing grade
if you just, don’t take another French class ever,” kind of a lot of stuff like that.

Drew: [00:07:19 ] Yeah.

Brianne: [00:07:20 ] And so at this point, he’s made it, he’s dropped out of college. He decides to go back. He gets diagnosed, I think somewhere in his twenties, and he’s able to get some accommodations to get back to college. And in the 80s
I don’t know exactly what that looked like, but I know that he… when I was a kid, he was using early versions of text to speak software.

Drew: [00:07:41 ] Oh, cool.

Brianne: [00:07:41 ] So he had early versions of Dragon, which were not very good at that time. And he was just like, “This is the worst thing in the world, but…” So this is another thing that was kind of going on around me
that was normal to me, that I had never really thought about.

Drew: [00:07:55 ] Yeah.

Brianne: [00:07 :