Tricia VanderHaar needed to see Taylor Swift. She'd seen her before, yes, but this was the tour. The "Eras" tour – a concept VanderHaar, 35, was far too familiar with. Eras defined her life: before, during and after chronic illness flare-ups.
She was born with an underdeveloped kidney and has faced kidney infections and urinary tract infections since childhood. But on Nov. 7, 2012, doctors removed a tumor on her bladder and diagnosed her with interstitial cystitis, or inflammation of the bladder wall. Eventually her bladder stopped functioning altogether.
"I could no longer feel the urge to pee," she says, which led to the return of her chronic kidney infections and self-catheterizing beginning in August 2021.
She started grieving her health. "Having that taken away from me, having the ability to feel and be myself because I was homebound or because I couldn't go to concerts or because I couldn't go out with friends and (do) the things that made me me, and then losing them, was really hard," she says.
Grief comes in all shapes and sizes beyond death – something VanderHaar and experts know "all too well."
'An isolating loneliness'
One might call going to the bathroom a sacred ritual. A peaceful, practical time to read a few pages of a book, to contemplate the day's events. But for people like VanderHaar, it was anything but peaceful.
"If you're somewhere, out and about, and you need to use the restroom, you may be in there a long time to do that," says Dr. Kenneth Peters, the chief of urology at Corewell Health in Southeast Michigan and medical director of the Beaumont Women’s Urology and Pelvic Health Center. "It's uncomfortable, because you're always retaining urine in your bladder, so you never get that sense of relief."
The self-catheterization process is a laborious and tedious endeavor: sending a catheter into your urethra to drain your pee; you have to use special wipes before and after. "It's a little bit like doing bathroom yoga," VanderHaar says. She simultaneously endured chronic pelvic pain.
"It was just such an isolating loneliness," she adds. "Not only was everything taken away and changing, but everywhere I turned to look for support, (given the pandemic) everyone was like, 'our lives are turned upside down too. I can't help you.'"
Grief experts empathize with VanderHaar. "We often grieve the life we thought we were going to have," says Amy Morin, licensed clinical social worker and author of "13 Things Mentally Strong People Don't Do." Our lives rarely go as planned, but "in the case of a chronic illness, people often wrestle with the idea that there's hope things might get better and the idea they should just accept things for how they are now," Morin says.
Jessica MacNair, licensed professional counselor, adds: "There is often a period of grieving for the old life and previous abilities that are no longer the current reality."
A solution for a new 'era'
VanderHaar was referred to Dr. Peters in October 2022. His multidisciplinary practice focuses on mind, body and spirit, and gave her hope for a new "era" – maybe one where she could actually make the Eras tour. They started her with pelvic floor physical therapy and pain medication, and managed her UTIs. They also looked at her bladder through cystoscopy, i.e. putting a tube with a camera in through the urethra.
With the device, "it's not like they're always feeling something, it's not like they turn it on when they want to void and turn it off when they don't, it's just behind the scenes changing signaling," Peters says. "And it's allowed her to start emptying completely on her own." This solution generally isn't offered to patients first thing in favor of less physically invasive treatments, like muscle exercises or even mental health care. But for VanderHaar, it was life-changing.
My dog died two months ago. Pet loss causes deep grief that our society ignores.
Grief lingers 'even when you get parts of yourself back'
VanderHaar wasn't nervous about the procedure – she'd had about 50 surgeries due to her bladder issues anyway, every 90 to 120 days.
Today, she's cleared from those 90-day surgery routines – and she got to see Swift in Detroit this past summer.
Her grief, however, remains: "Even when you get parts of yourself back, it doesn't mean it doesn't hurt that those other parts are gone."
But seeing Swift perform, something she never thought she'd be able to do while she was mostly homebound, was the true marker of this new "era" in her life. She says Swift's song "You're On Your Own Kid," encapsulates her experience. She feels the lyrics deeply: "I gave my blood, sweat and tears for this."
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This article originally appeared on USA TODAY: This Taylor Swift fan is grieving her health after losing urge to pee