Scheduling classes is a struggle for most college students. It’s even more challenging for Los Altos native Katie Taves, who must consider several factors when selecting her classes at the University of San Francisco.
Taves, a rising sophomore diagnosed with juvenile idiopathic arthritis at age 9, must allot “crash days” with fewer classes. She doesn’t take a class before 10 a.m. to account for morning stiffness, when fluid gathers in her joints and makes movement difficult. And she blocks out time for her treatments and makes sure she has the 13 pills she takes daily.
“You have to be very organized to have arthritis,” Taves said.
And Taves is organized to a T, balancing her arthritis, her academic schedule and her role as her sorority’s fundraising director. Last month, she was honored at the Arthritis Foundation’s Walk to Cure Arthritis in San Francisco because she has “thrived,” according to the nonprofit organization’s website, which referenced Taves’ position in her sorority and her dean’s list standing every semester.
Taves schedules her social plans, too. She doesn’t take methotrexate – a chemotherapy medication commonly used for treating arthritis – on Sundays because of weekly Monday-night sorority chapter meetings. She also might cancel a weekend plan to make another plan work.
“It’s allotting your energy,” she said. “So there’s a lot you can’t do, but there’s also a lot you can do.”
That mind-set, Taves noted, is more about focusing on the “realistic” than the “positive” – her personal philosophy is to find a “symbiotic and peaceful relationship” rather than fight it. Younger kids often have the mentality of fighting the disease, Taves said, but that becomes “so tiring.”
“It’s just weird, because you don’t know anything else – like, I know I’m in pain, I know everything hurts, but there’s nothing to do about it, so you just kind of move with it,” she said.
Growing up with arthritis
When Taves was 9, her arthritis started in her right knee. She now has arthritis in every main joint – in listing them, she said it felt like she was playing “heads, shoulders, knees and toes.” She likens having arthritis to “that feeling when you have a horrible flu” and can’t move because of aching joints – but with worse joint pain.
“As I got older the disease got worse, but it got easier to live with it because it was more symbiotic – it was what I had grown up with, so there’s never a moment where I’m, like, ‘I can’t do so much,’ because I’ve never been able to do it really, as far as I can remember,” she said.
Nearly 300,000 children nationwide have arthritis, with Taves’ form – juvenile idiopathic arthritis – the most common type in children, according to the Arthritis Foundation. In her time at Loyola School, Egan Junior High and Mountain View High, Taves never met another student with her illness.
Taves now counsels children who live with rheumatic diseases. She described the Arthritis Foundation’s Camp Milagros in Livermore as the “best place on the planet.” Taves said the camp, which she also attended as a child, teaches kids to be less “scared and embarrassed” by their illnesses.
“As a counselor, you get to guide them through their fear and anxiety,” she said. “Watching your kids that you had before step up a little bit and be a little baby mentor (to kids who were more recently diagnosed) – it’s so cute, it’s so happy.”
And as a communication major, Taves hopes to do something similar career-wise.
“I know the most important thing for me is I just want to help people,” she said. “So whether that’s as a researcher, as a lawyer, as a fundraiser, just kind of whatever it is, I want to go in to help people.”
Taves also attended the foundation’s Teen Retreat with many of the friends she first made at Camp Milagros; she missed her homecoming and prom to attend the retreat and now volunteers there.
Taves’ mother, Suzanne, the Arthritis Foundation’s senior development director, said camp attendees often return as counselors or volunteers, like her daughter. Suzanne added that the retreat in particular encourages teens to discuss “normal high school things” like relationships with others who have navigated those same issues with arthritis.
“The kids have a lot of questions in their junior and senior years that they don’t wanna talk to their mom about or maybe even to their doctor about,” Suzanne said. “There’s a lot, and so it’s a really safe place for good conversation.”
Lindsay Ward, the Arthritis Foundation’s development manager, said approximately 200 people attended the Walk to Cure Arthritis, with passersby also inquiring about the event. Ward added that there was “no question” that Taves would be the honoree at the event, referencing her “articulate” manner and the challenges she overcame to succeed in college.
“The fact that she’s not afraid to talk about having arthritis also makes her an incredible ambassador to show that you can have a good life – you can live your best life and … you won’t have to be held back,” Ward said.
Taves said that the anger, frustration and anxiety that arthritis caused limited her until she was approximately 16 years old. Therapy, counseling at Camp Milagros and just getting older, particularly with her friends from Teen Retreat, have led her to the symbiotic relationship with her arthritis she was seeking.
“I still don’t believe things change your life,” she said. “I believe it just is your life and anything of what it’d be like if you didn’t have this or what if I didn’t do that – even for healthy people – I’m a big believer that those questions can be damaging, because you can idealize something that can never happen.”