77 – Kayle

Kayle Hill talks arthritis, medical trauma, and hypermobility.

Transcript

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

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Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking to Kayle Hill about rheumatoid arthritis, medical trauma, and hypermobility. A couple of content notes for this episode: medical trauma and PTSD are major themes and a lawsuit is discussed starting around 55 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: Okay. Well, I like to start just by asking people, how has your health as a kid?

Kayle: Not good. It was never good. As early as I can remember, I’ve always had a chronic illness. My relationship to it has definitely changed over time because I’ve acquired more and more and more chronic illnesses, but yeah. It was never really that great, especially because my major disease back then was rheumatoid arthritis, and I was on methotrexate, which is a chemotherapy drug, and I was just so sick all the time.

Brianne: How was that diagnosed? Like, how did you end up getting diagnosed with juvenile RA basically, right?

Kayle: Yeah. So, I know this only from the stories that my mom has told me, but basically, it was my left ankle to begin with. And it was just red and swollen. And she’s a nurse, so even as I was growing up, she was always like, “Okay, let’s just wait. Let’s not freak out and go to the doctor.” She thought maybe I sprained it. I don’t know how. I was a baby. I was delayed in walking, and eventually it got to the point where even when she would try to put my socks on, I would just scream.

Brianne: Presumably from pain, I get that it’s anecdotal. Yeah.

Kayle: And so she took me to the pediatrician. And he took some images, and he was like, “This is not good.”

Brianne: “There is damage.”

Kayle: Yeah. “There’s damage, and it’s not the kind of damage that can heal.” So I was brought over to Boston children’s hospital, and there’s a whole side story about the first rheumatologist we saw who was apparently absolutely terrible. But then the head of the rheumatology department… my case kind of got pushed up to him, and I was with him until I was 18.

Brianne: Yeah.

Kayle: From like, one year old to 18 years old.

Brianne: So like, as long as you can remember, basically.

Kayle: Yeah, yeah. He was like, the doctor. We practically worshiped him growing up because he would just… you know, he was more of a primary care doctor to me than my own primary care was, but also my feelings about him have changed over the years as well.

Brianne: I believe that that could happen. Okay. So yeah, it was always kind of a part of it, and you’d been in treatment this whole time, as you said. So with methotrexate, which is obviously not a gentle medication, as far as these things go, but if you’ve always been on it, you’ve probably always kind of been aware of the trade-off. Do you feel like that was something that you thought about at all? Like,