By Kirsten Ballard
Headache, migraine, and cluster disorders are known for a litany of isolating, unpleasant symptoms. A side effect you don’t expect to hear is “family,” but that is what these three pairs found through patient forums, conferences, and advocacy.
Ashley Hattle and Andrew Cleminshaw both found a community at Clusterbusters, a nonprofit dedicated to helping people with cluster headache, but they also found each other—and a lifelong partnership. The U.S. Pain Foundation first talked to the couple for the second edition of the INvisible Project in 2018. They married in September 2018 and are now parents to 5-month-old daughter, Lucy Rose.
Since 2018, Andrew sums it up as “everything is pretty much the same. Now we have Lucy, and Lucy’s awesome! She’s great. [Ashley’s] still writing, I still work at the credit union, we both still advocate.”
“And we both still have cluster headaches!” says Ashley.
In the first profile, cluster headache pain was described as more painful than childbirth, and as a new mom, Ashley has first-hand insight into the comparison.
“I did a good portion [of labor] unmedicated and I’ve had status migraine headaches,” she says. “I would compare the contraction phase to a status migraine. It drones on and on and on and it breaks you down and breaks you down and kills your spirit. I would compare the pushing phase to a cluster headache, where it’s ‘get this [expletive] thing out of me. Make it end.’ But the poignant pain of cluster headaches is worse than childbirth. And you don’t get anything good from it.”
“And you really only have to do that, for most people, one to four times,” laughs Andrew. “If you want to relate a cluster headache to babies, I’ve put about 40,000 on this planet.”
Andrew became chronic when he was 12 years old and began attending Clusterbusters events a few years later at the urging of his mother. He admits he skewed younger than the usual conference attendee and was hesitant to go, but after his first, he was hooked. Now he’s been going for over a decade and serves on the board for the nonprofit.
“The people that comprise the group are what bring you back,” he says. “I mean, the information at the conference is very similar year to year, because as you know, it’s a very slow-moving process in the world of regulations and scheduling of drugs and things like that. So why else would people come back year after year when the slideshows are the same and the speakers are the same and the difference is the people? It’s a family.”
Ashley attended for a different reason; she was there to work on her book, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. But what started as research in 2014 ended with finding her best friend and now husband.
“I expected to go to a very stuffy conference,” she laughs. “I had no idea what I was stepping into when I went to the reception on Thursday evening. I ended up interviewing 40 people that weekend. And I met him, and I stumbled upon this family of support. I knew I needed support and needed to meet other people that had cluster headaches, but I had no idea how much I needed that until I was there and sobbing with these people who actually understood me.”
While Andrew is chronic and Ashley is episodic, it is empathy and understanding that unite them.
“It is nice that we joke around about it more,” says Ashley. “There are some really dark aspects of cluster headaches. During bad attacks, you regularly think about ways to kills yourself, to kill the pain. Being able to talk about that without it being a big deal was really cool.”
The forever friends
For Tom Sayen and Mia Maysack, it is the “big three” that united them: cluster headache, migraine, and fibromyalgia.
“I felt very alone in my experience,” says Mia. “And I knew that I couldn’t be the only one. So I just kind of started branching out, looking things up, trying to figure out what I could do, how I could do it.”
What started as a last-minute seat swap at a U.S. Pain-sponsored dinner during Headache on the Hill has become what they call “forever friends.”
“It’s the kind of friend where you feel so secure with her. You don’t have to talk to her every day. And if you don’t hear from her for a week, it’s perfectly okay. So she’ll usually send you a text and say, hello, forever friend. Or she wants to talk to you. She’ll say, ‘We need to connect,’” says Tom.
Mia, 31, lives in Madison, Wisconsin; Tom, 71, is in Philadelphia, Pennsylvania. But they stay in touch through texts, advocacy, and side adventures at conferences—whether it’s skipping another day of conference lunch chicken for Whataburger or exploring the Fort Worth Water Gardens.
“She empowered me to go all the way down to like 20 feet [near the water] and stand there with water rushing, and she took my picture,” says Tom. “And it’s my profile picture because I’m so proud that I was empowered at age 70 to do something. I had been there in 1984 and done that. But I thought ‘I’m not going to get down. I’m going to slip and fall.’ And she took my hand and said, ‘You’re going down.’”
Tom has visited Mia in Madison, serves on the accountability board of her foundation, Keepin’ Our Heads Up, and even provided a testimonial for Mia’s book, A Guide to Reclaim Your Mind.
“He was the first one to ever see [my] office, but that just goes to prove how supportive and how much of a good friend and confidant that he has been,” says Mia. “What I appreciate about Tom is that we did meet technically through our pain, but then we were able to cultivate a relationship that far surpassed really anything that has to do with it.”
Extreme migraine pain and even more extreme treatments bonded Jill Dehlin and Julie Fleck—and cemented Jill’s nickname.
Both tried a sphenopalatine ganglion block procedure, in which anesthetic is delivered to a group of nerves behind the nose. The process involves six long orange sticks being stuck up each nostril. One selfie from Jill to Julie later, and the nickname “Pinocchio” or “Pinoc” was born.
“It’s a bonding experience when both of you have been through some sort of a procedure like this that not many people have heard of and even fewer yet understand what’s behind it,” says Jill.
The two met on an online forum in 2013 before meeting in person at a conference a couple years later.
“I came down the elevator and there is this woman with this giant smile on her face,” says Jill. “I mean, I felt like I’d known her my whole life because she just is the most welcoming person that I’d ever met. And, you know, she wasn’t shy at all. She just envelops me and that’s the best way I can think of to describe it. We have so much in common.”
The two call themselves dopplegangers. Though Julie is in St. Louis, Missouri, and Jill in Okemos, Michigan, they’ve both dealt with migraine attacks, seen the same doctor, had similar treatments, both were nurses, and are advocates—and when Jill went to Julie’s daughter’s wedding—showed up in almost identical purple dresses.
“She’s my bestie,” says Julie. “And it’s not just about migraine. It’s about everything. I mean, my entire family knows her and knows her very well… Jill is the greatest support system I think I’ve ever had.”