Jesse Thorn is a podcaster, radio host, and broadcast innovator. He has also had migraine disease most of his life. You may have heard Jesse on one of his popular podcasts or his National Public Radio show, Bullseye. He established the podcast network, Maximum Fun, which comprises dozens of podcasts on varied topics. Jesse has brought awareness to migraine and headache disorders by speaking about his own disease on his shows. Jesse’s side hustle, Put This On, is an online shop for eclectic vintage finds. The National Headache Foundation had the privilege of interviewing Jesse about his experience living and working with migraine disease.
NHF: How old were you when you experienced your first migraine attack? How long after the first attack were you finally diagnosed?
JT: I think I started getting headaches around age 10. I was promptly diagnosed, but there wasn’t an effective treatment for me until the triptans started rolling out when I was a teenager.
NHF: What type of migraine do you have?
JT: I have classic migraine disease, and it is mostly pain. Sometimes I experience a little bit of loss of vision or some nausea when it’s really bad, but for the most part, it’s like there’s a pain dial in my head, and once in a while, someone turns it up.
NHF: What are your migraine triggers?
JT: Missing a meal or being hungry is my biggest trigger. I get a headache if I haven’t eaten lunch by 1 o’clock, and snacking doesn’t help much, it’s got to be a meal. Sleep timing disruption is a huge trigger. Getting up early or going to bed late can be brutal.
I went on a migraine diet many years ago – eliminated all the common food triggers and then reintroduced them slowly to see what caused problems. Raw alliums like onions and garlic are tough for me, as is chocolate and caffeine. Thank goodness I can eat hard cheese though, I was worried about that one.
Anxiety almost always triggers a headache for me. If I’m in conflict with a coworker or having a business problem or I’m worried about one of my kids, I’m constantly aware that this is probably going to get me a headache on the back end.
NHF: How has migraine disease impacted your career choice?
JT: I have a hard time having an hourly job. I’ve had a few, and it was really tough to work on someone else’s schedule when I couldn’t plan the schedule of my life. I’ve worked for myself a long time, and one of the reasons is that I never have to justify to others my unusual work schedule, or time when I just can’t be productive. I’ve learned to rally for showtime – I’ve done a lot of shows with headaches, sometimes really bad attacks. That’s the non-negotiable part of my job. But everything around that… I try to give myself flexibility.
NHF: What accommodations have you made to your home or work due to migraine?
JT: I have an office with a couple dozen employees, but I work from home when I can, and schedule everything around my meals. I fight to keep control of my schedule and work-life, so it is manageable for my headaches. It’s tough.
The hardest part for me is asking for accommodation from others; I hate it. I think because there were folks in my childhood and adolescence who interpreted my headaches as malingering, I came to default keeping my pain a secret. I’m sure folks with frequent headaches, can relate to the simple inconvenience of explaining an incurable, chronic, invisible illness to people around you; it stinks.
In the last 5 or 10 years, I’ve made a conscious effort to talk about my headaches and what I need. There are so many times when I’m suffering, even a well-meaning friend might think I’m mad at them or being weird. Just because I can hide my pain doesn’t mean I need to. A lot of folks in my life are glad to do their best to be helpful.
When I was a kid, my dad worked for his best friend, a guy named Ed Roberts. Everyone should Google him; he was an amazing man. He had childhood polio and could only move one finger and his head. He used a breathing machine at all times. Ed went to UC Berkeley and started the Independent Living Movement for People with Disabilities.
I never used to think of myself as having a disability. I mean, I’m successful, I’m self-reliant, I can move all the parts of my body and see and hear and so forth. But the truth, of course, is that I have a disability. So, I often think of Ed; he was a badass who believed he deserved just as much of a life as anyone else, whether or not he had an iron lung. And he was right.
Thinking of myself as a person living with a disability has freed me in a lot of ways, made me feel more powerful. I see what I overcome every day just to take care of my family or do my work, and I ask what I need to make a contribution to the world and live a satisfying life.
NHF: Do you have any advice for people living with migraine?
JT: I’ve met a lot of people with migraine disease through my work – people who listen to my shows, come to live shows, that kind of thing. I’m astonished at how many have never sought medical help. There are a lot of reasons – folks (especially women) aren’t taken seriously; they’re shamed for doing a “bad job” managing their headaches and triggers; they get a bad doctor; they’re scared of doctors; their insurance or lack thereof puts up roadblocks; they don’t feel worthy.
So, my biggest recommendation is to seek care. You may have to take more responsibility for it than you’d like, you may get a bad doctor who makes you feel embarrassed or worse, but there are effective treatments for most people, and they’re now mostly affordable. Nobody deserves to suffer.
Maximum Fun: https://maximumfun.org/podcasts/
Put This On: www.putthison.com
by Linda Summerfield
National Headache Foundation