Yeah, it hurt to move, but I could still push through and play, so I thought I was OK. It’s just how I lived my life. – Hannah Robison
PROVO — In the weeks after her daughter was diagnosed with Lupus, Jan Robison managed to see her husband off to work and helped her children get to school before she succumbed to the despair that seemed to shadow her.
“The kids would go to school, and Hannah would be sleeping in,” Robison said of her youngest daughter, who was diagnosed with Lupus at age 12. “I’d just get back into bed, and I would cry. I was really sad, and I didn’t have a lot of hope. I felt really hopeless about her future. I didn’t know what was in store for her. I guess I had a little depression.”
Her sadness was justified.
What the mother of four assumed were growing pains and normal pre-teen fatigue turned out to be an auto-immune disease that could rob her daughter of a normal, healthy life. The prognosis for Lupus ranges from mild issues with fatigue, sore joints and headaches to life-altering, even life-threatening issues. The fear was exacerbated by the uncertainty about whether her daughter could — or should — continue playing sports.
It was obvious from a young age that Hannah had real talent. She fell in love with volleyball in grade school, a sport she gravitated to after her older sister began playing. Her sister, Dani, earned a scholarship to UVU, and Hannah hoped to do the same — although she dreamed of attending a school far from her Orem home.
But an unpredictable, pain-inducing disease created so much uncertainty about Hannah’s future, which only fed her mother’s fear.
“I was really concerned,” Jan Robison said. “I didn’t know if she’d be able to do normal things. Mornings were really bad. ... I was really, really down about it. Anytime something happens to your kids, especially when they’re so young, it’s just horrible. It’s a horrible feeling.”
It was the daughter, the one for whom she wept, who banished any shadows from her heart. With one conversation the little girl showed her mom how to find hope in the inevitable challenges she would face.
“Hannah is really the one who boosted me up,” Jan said. “It was really memorable. She came to me and said, ‘Mom, I know I’m going to learn something from this.’ I felt like I was the kid, and I wasn’t the one supporting her. I realized that and I switched my attitude. I thought, ‘I need to be there for her, not her for me. We’re going to get through this no matter what happens.’”
Hannah, now a senior outside hitter for BYU’s nationally ranked volleyball team, said she never realized how devastated her mother was about her diagnosis until very recently.
“When I talk to my mom about it, it was a lot harder on her because she understood what it meant,” Hannah said.
But all she saw from her mom was support. In fact, she said whether it was intentional or not, her parents provided her with the best strategy for dealing with a disease like Lupus.
“My parents are very much be-positive, look-forward people,” she said. “I know it’s such a cliche, but it’s really gotten me far. They always say, ‘You got this; you can still do this.’”
She smiles as she considers how her parents support her in very different ways. Her dad will tell her when and where she can improve, but emphasizes working hard for the next opportunity.
Her mom, on the other hand, is an unwavering fan.
“My mom thinks I’m the best player in the entire world,” Hannah laughs, “even though I realize I am not. But she was always so encouraging.”
Hannah admits part of her optimism likely came from being so young. In fact, she remembers hearing doctors discussing whether or not she’d be able to continue playing volleyball at a competitive level.
“I remember them saying, ‘We’re surprised she’s still playing the way she is right now,'” Hannah recalled. “I remember them saying that, but I remember thinking, ‘Well, I’m playing so I’m fine.’”
In fact, she said volleyball was what gave her hope when her joints ached so bad she literally couldn’t get out of bed in the morning.
She remembers her mom allowing her to sleep in and then, once she started feeling better, she said her mom allowed her to go to afternoon classes and volleyball practice.
“Usually halfway through the day, I’d be feeling good enough to go to practice,” Hannah said. “And since that was something that kind of made me happy, my mom would take me.”
Before her diagnosis, Hannah struggled with nausea, skin so dry it cracked and bled, as well as joint swelling and pain so severe that she’d ask a friend to open her locker for her. It was the family’s orthodontist who convinced Jan Robison that the sores in Hannah’s mouth were a sign of something far more serious than growing pains.
“I can’t remember my thoughts,” she said. “Yeah, it hurt to move, but I could still push through and play, so I thought I was OK. It’s just how I lived my life.”
About a month after she began taking medication for Lupus, she began feeling better. She only missed one game due to pain from Lupus in her entire career.
As coaches began recruiting her, the family told them about her diagnosis. Most didn’t seem concerned because Robison was proving to be one of the state’s best players as she helped Orem to a third-place finish in the 4A state tournament.
One of those who hoped to sign Robison was BYU head coach Shawn Olmstead.
“I probably didn’t know what it was,” the coach said laughing. “I remember her telling me, and my first reaction was, ‘OK.’ There was nothing in her play that would ever signal (Lupus).”
He consulted with doctors and trainers who told him what Lupus was and that it could be managed. What he didn’t know is how the mediation and/or Lupus symptoms would take a toll on Robison’s body as she tried to endure the rigors of a collegiate sports season.
“She’s dealt with a lot of injuries,” Olmstead said. “She starts out every year at a very, very high level. We say, “Hannah’s rolling! She’s made great improvements.’ And then it seems like every year we get to this point (about halfway), and I don’t know what it is, but her body just begins to break down.”
The first time it happened was her sophomore season. She had just started traveling with the team near the end of her freshman year. She had a “stress reaction” in her left shin.
“It just took a long time to heal, so I was out most of the season,” she said. She struggled with some minor foot and joint injuries last year, and then this year, she suffered a stress reaction in her right shin.
Her struggle to stay healthy has been frustrating. At first she thought it was the usual setbacks most athletes suffered, but when problems kept recurring, she wondered if it was Lupus or a side effect of her medication.
“I do remember thinking when I was really kind of sick and we’d just found out what was wrong, I was trying not to cry,” she said. “I just remember thinking, ‘Christ knows how I feel.’ I didn’t know anybody else who did. And knowing somebody knew and understood how it felt, it did help me. I thought, ‘I’ll be OK.’”
Despite her initial desire to play volleyball for an out-of-state school, Robison said choosing BYU became the perfect place for her to find her own faith.
“I’ve been able to grow (in my) faith and spiritually, more than I thought I was going to or needed to,” Hannah said. “I wonder if I would have grown in the same way if I’d gone somewhere else.”
She said she would definitely change her health situation if she could, but she’s also grateful for what she’s gained through her challenges.
“I can honestly say it’s strengthened my relationship with God because when I can’t solve it, when the doctors can’t solve it, that’s the only other option really. But I’ve also learned I shouldn’t make that my last option. It should be me putting in all the effort I can, and also asking for peace and understanding. The pieces come together as I continue to do that.”
She said she’s realized that when she turns to God after everything else has failed, she tends to struggle more, especially with the inevitable “Why me?”
Nearly a decade after her diagnosis, Hannah knows how fortunate she is that she’s been able to play as much — and as well — as she has for the Cougars.
“When I think about the condition I’m actually in, I understand how lucky I am,” she said. “I can kind of see why people are like, ‘Wow, you play in college?’ This year I have paid more attention to how unique it is.”
Hannah is not one to seek sympathy — or accolades. In fact, she went out of her way not to talk about it publicly for many years. It’s only been recently when coaches and others have convinced her that sharing her own struggles — and triumphs — might help or inspire someone else, that she’s agreed to talk about living with Lupus.
Her unapologetic cheerleader is grateful Hannah if finally sharing her story.
“She’s just been so blessed,” Jan Robison said. “She’s done amazing things, things that people said she couldn’t. ... I just feel like we’ve learned a lot and she’ll be strong for other people.”
Which is something Olmstead said Hannah’s done for her teammates — regardless of her ability to play.
“She’s such a huge part of our team that we still (took her on road trips),” Olmstead said. “That’s a huge deal that we still want her around our kids, and we want her around our team.”
In BYU’s second-to last home game, Hannah not only played back row, but she took a few swings at outside hitter. She even had the set-winning kill in the victory. The Cougars have spent most of the season in the national rankings — moving up as high as No. 9. They are currently No. 17 with a 25-4 record.
The Cougars will take on Seton Hall in the first round of the NCAA tournament Thursday at 5 p.m. in Arizona. Robison has been working her way back from an injury and is most often contributing to the team’s defense. Olmstead praises her volleyball skill, but then adds it’s her positive attitude and happy energy that also help the team.
“She is a friend to everyone,” Olmstead said. “She attracts good energy, and those things matter to me. ... She never tries to get out of anything; she doesn’t miss anything. ... It’s remarkable what that kid is dealing with.”
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