75 – Alex

Alex Haagaard talks narcolepsy, mast cells, and inclusive design.

Transcript

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

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 with Alex Haagaard about narcolepsy, mast cells, and inclusive design. A few content notes for this episode: There’s some COVID vaccine talk around 45 minutes in and lockdown comes up around 2 hours and 20 minutes in. There’s a mention of Vyvanse at around the hour mark, and a mention of cannabis around an hour and 45 minutes in. There are oblique references to suicidal ideation at around an hour 25 and an hour 35. And there’s a mildly graphic description of a bleeding time test an hour and 50 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 was your health as a kid?

Alex: Oh. Oh God, that’s a complicated one. So yeah, I was a sickly little kid, and at the same time, my doctors and my parents really liked to reassure me that I was a healthy little kid. Never… never heard anyone talk about that before on the void.

Brianne: Very unusual.

Alex: Yeah, my whole health journey started when I was four, and my mum took me into urgent care, and they discovered that I had petechiae, which is like a pinprick kind of bruising that’s most normally associated with bleeding disorders. And they freaked out because for them it was like leukemia. That was their big association, and so that started me on the whole thing. And I didn’t have leukemia. I didn’t have AIDS. I didn’t have lupus. I didn’t have any of the other really scary things that they tested me for. So it eventually got sort of downgraded to idiopathic thrombocytopenic purpura and they just sort of left it there for another 20 years.

Brianne: Okay. Were you aware, at that age, that they were looking at… considering serious health stuff? Did that imprint?

Alex: It did because my mom does not handle stress or trauma well cause she’s… she’s got a lot of trauma. So yes, I was the emotional regulator for my parents. So yes, I was very aware of all of that and it was amazing. It was… it was honestly… it was weird cause I was aware, but I also don’t think it really like hit me because they ruled out the really scary stuff sort of within a span of three months. So there was sort of this period of very scary stuff, but the stuff that was most scary for me about that was the actual physical stuff that I experienced in the hospital, which we can get into cause that was a whole thing, too. And then the prospect that I had something that was like fatal sort of dissipated over the course of about three to six months. And then I was left in the position where I was still like, “I’m in pain. I’m getting sick a lot.” And they were like, “No, you’re really actually very healthy.” So it was this really weird relationship, I think in a weird way, like, because they’d ruled out that fatal stuff, that set me off on the whole relationship that I had to my health, which was not being able to tell whether I was healthy or not. Yeah.

Brianne: It’s hard