Chronic illness just one more thing to manage for some athletes

There were days Shannon Boxx was so fatigued that going up against the best soccer players in the world seemed like child’s play compared to putting in just five minutes on the treadmill.

Undeterred, Boxx battled through symptoms that included joint pain to become a three-time Olympic gold medal winner and one of the most decorated players in the history of the U.S. women’s national soccer program.

Indeed, there might be nothing more inspiring than watching somebody perform at the highest level athletically while battling through a chronic health condition.

In 2002 Boxx, who as a freshman in 1995 helped Notre Dame to it’s first-ever national title, began experiencing severe fatigue. A few months after the first bouts, she was diagnosed with Sjogren’s syndrome, an autoimmune disease in which fatigue is a primary symptom.

“There were days I felt like I was going to fly off the back of the treadmill,” she said. “Those were the days I was going to have to push the ‘stop’ button, walk home and say, ‘OK, today is a day to get some rest and try again tomorrow.’ Sometimes I would try the next day and it would be the same thing. So, I would go home and try again the next day. I had to have that mentality, otherwise I would have just beat myself up.”

Eventually, fatigue was accompanied by joint pain that hindered her ability to perform the simplest tasks and puzzled physicians who could not pinpoint its cause. In 2008, after years of mental anguish for Boxx from not knowing what was causing the pain, doctors nailed down the cause: lupus.

Lupus, a chronic disease in which the body’s overactive immune system attacks tissues and organs resulting in, among other things, joint swelling and pain. Like Sjogren’s, it occurs far more frequently in females  (9 out of 10 cases) and is difficult to diagnose because symptoms common with lupus are often associated with other diseases.

The diagnosis provided Boxx with some relief in that she finally had something to grasp and could begin to manage the illness. 

“I had something concrete to hold onto, to say, ‘Okay, now I know exactly what I am fighting and these are the steps I need to take in order to be able to still do what I love to do,’ and that is play soccer,” she said.

The biggest step was understanding what her body was doing, or about to do.

“The big thing for me was really listening to my body and reading my body and figuring out, ‘What are the triggers that can start a flare?,’ ” said the 42-year-old mother of two, who is a coach at Bridge City Soccer Academy in Portland, Ore. “Things like my wrist would start to get achy and sore, which almost all the time would lead to more flares coming, such as the fatigue. Understanding that, once I started to feel my wrist get a little bit sore, what could I do to minimize a flare coming?” 

In addition to medication, which as an Olympic athlete required her to obtain therapeutic use exemptions (TUEs), Boxx went on a gluten-free diet that she said helped control the flare ups. Altering her workout routine was another key. While she did the same weightlifting exercises, she did so with less weight to help reduce the joint pain.

“I worked with my trainer to manipulate my training sessions so that they were still productive, but with not as much stress on joints,” she said. 

Living in Portland the past six years has proved helpful in dealing with her symptoms. Oregon offers a much different climate than her native Southern California.

“Part of the reason why we moved up here is because of that,” she said. “The sun is a very big trigger for lupus. I notice the difference when I am out in the sun too much. I definitely have a flare. I am less in the sun anyway because I am not playing, so it has helped to not always be in the sun.”

Diet is a key to combating a number of chronic health conditions besides lupus, such as diabetes and Crohn’s disease.

Golfer Danielle Bambola makes sure she has the proper drinks and snacks before hitting the course — “sodas and a syrupy type of candy” — that allow her to get through 18 holes, lest her blood sugar levels act up.

“Some days are different,” said the senior at SUNY-Cortland. “I could eat nothing at all and my blood sugar is high the whole day. Other days, I have to eat all day because my blood sugar is not high enough.”

Bambola, who has been the Red Dragons’ best player in each of her three seasons and has virtually re-written the program’s record book, is a Type I diabetic. She was diagnosed following a bout of mononucleosis that left her in a coma for two days during her freshman year at Cortland.

The diagnosis was a jolt for someone who had no previous health issues. While Bambola has days that are better than others, she appreciates that she can still compete and do so at a championship level.

“There have been plenty of times when I would have a mental breakdown because I was fine for my first 18 years, and then one day my life changed,” she said. “But there are so many people that have terminal illnesses, and I am playing golf and doing what I want to do.”

Making that possible is a regimen of diet management and continuous glucose monitoring (CGM) with a device worn on her arm that tracks sugar levels and compiles data that is sent to her phone. From the data, Bambola can better address how she proceeds with diet and exercise.

“I don’t have to prick my finger six, seven or eight times a day,” she said. “I can just check my phone and know what level my blood sugar is at.”

That’s not to say everything is smooth for three to four hours on the golf course. There are still times when her glucose levels might not be where she needs them to be.

“I have to inject (insulin) before I play, and if I inject too much, which has happened multiple times and really affected my game on tournament days, I have to eat as much as I can on the first couple of holes,” she said.

That is all part of what makes diabetes a tricky health condition to manage.

“If your blood sugar slightly gets out of whack, bad things start to happen right away,” said Sid Angadi, an assistant professor in the College of Health Solutions at Arizona State University and a fellow of  the American College of Sports Medicine. “I would say, from a management perspective, diabetes is probably the most challenging (chronic health condition) and is made more challenging by the fact that, basically, exercise pushes sugar into the muscle because muscle needs fuel during exercise. So, exercise itself can mess with your body’s ability to regulate blood glucose.”

Not long after eating, Bambola begins to feel like a different person and it usually lasts for the duration of her round.

“It could take 10 to 15 minutes, and I have to push through those first couple of holes before bouncing back,” she said. “It’s like I bounce back out of nowhere.”

Kris Freeman wasted no time in bouncing back after receiving the news that he was a Type I diabetic. At age 19 and only three years away from competing in the 2002 Winter Olympics in Salt Lake City, the first of his four Olympics, the cross-country skier found out through a routine fasting-glucose test that his blood sugar levels were twice what they should have been.

Only three months earlier Freeman gave up his athletic scholarship at the University of Vermont in favor of training full time with the U.S. national program in Park City, Utah. Doctors told him he would not be able to compete at the Olympic level.

“At that point in time, the common thinking on diabetes was that you could not compete at the Olympic level in an endurance event,” he said. “I saw multiple doctors who told me that I had to set my sights lower, I could keep skiing at the club level and I should not try for the Olympics. That was very crushing.”

Freeman was under contract to the U.S. Ski Team for a year, so he was not about to be kicked to the curb because of the diagnosis. Instead, within a few months he connected with a team physician and together they worked diligently on what Freeman said were “insulin protocols” for different training levels.

“I was very meticulous in recording what I ate, how much insulin I took, how I felt, what my blood sugars were throughout a workout, what they were throughout a race,” said Freeman, who like Boxx needed a TUE because insulin is a banned substance in Olympic competition. “I would try to come up with repeatable scenarios so that when I was in a race, I would not have to check my blood sugar or make corrections.” 

Freeman, a 39-year-old father of a 14-month-old boy, wears two products to help him manage diabetes: an insulin pump and a CGM device, which he started using in 2010.

“The continuous glucose monitor is pretty amazing,” he said. “It is one of those products where, with each generation it gets better, more user friendly and more accurate. The feedback and the advances are remarkable.”

“Remarkable” doesn’t begin to describe the sudden pain Cory Wheeler  experienced that led to a Crohn’s disease diagnosis.

As a 16-year-old pitcher and second baseman trying out for Methuen (Mass.) High School baseball team in March 2017, Wheeler felt pain in his stomach. There was no reason to sound the alarm at first, but the pain soon spread.

“It happened very quickly,” recalled Wheeler, now a freshman at the University of Massachusetts-Lowell. “I would experience pain in my stomach every time I ate, and I thought it was a stomach bug or something like that. Then my back started hurting.”

A chiropractor could not come up with any answers. Steroids and adding powder packs of Prilosec to drinks kept the symptoms under control and helped him get through the baseball season. That June, three months after the ordeal started, Wheeler experienced pain so severe that he had to be hospitalized.

“The symptoms were getting worse and worse and ultimately, that summer, I had to have surgery,” he said of a resectional, in which part of his bowel was removed.

The result was that he had to put pitching on hold for a year.

“They opened up my stomach from the left side, so there was a giant scar,” he said. “I had to work out and build my muscles back up. Pitching was the hardest thing I had to do after surgery because of all the core work that I had to do to get back.”

What Wheeler could do, though, was still play second base. So he played the position exclusively during his junior year before taking the mound again as a senior.

“It was very difficult not being able to pitch,” said Wheeler, who intends to play on the club team at UMass-Lowell in the spring. “Junior year, there was no way I was going to pitch. By senior year, I felt 100 percent and pitched again.”

Every eight weeks Wheeler undergoes a procedure where medication (Remicade) is injected intravenously to decrease inflammation and potential stomach pain associated with his condition. While he follows a gluten-free diet to maintain good health, he has resumed eating in a manner at least somewhat similar to what he did prior to the onset of his ordeal.

“I have branched out a bit and have started eating steak,” he said. “I am glad I am able to because that’s my favorite food.”

David Stegemann has never had to cut back on his favorite foods, but when he was 8-years old his parents took him to a dermatologist to try to determine why he developed a white patch on the right side of his body and red marks were appearing on his face.

As it turned out, the white patch and the facial marks, known as angiofibromas, led to the diagnosis of tuberous sclerosis complex. The disorder is characterized by the growth of benign tumors that occur in many parts of the body. In Stegemann’s case, kidneys and the brain.

Seizures are common for people that have tumor growth in the brain, but the senior tight end at SUNY-Cortland has never had a seizure or any other symptoms. Stegemann has also never taken any medication. Rather, he gets twice-annual brain and abdomen magnetic resonance imaging (MRI) exams as a precaution. 

The scans proved critical as during his senior year in high school and again last year Stegemann underwent embolization procedures for tumors on his kidneys.

“The embolizations went well,” he said. “I am doing great and I am lucky to have never had a bad symptom.”

While the embolizations forced him to lay low for a couple of weeks, the condition otherwise has not resulted in Stegeman having to alter how he goes about training for football or anything else he may want to do.

“My parents and my doctor told me that I might as well do the things I love and see if something happens, or not do anything at all and have nothing happen,” said Stegemann, who became a junior leader of the Tuber Sclerosis Alliance while in high school. “So, I have been living my life and doing what I love. I was a three-sport athlete (football, basketball, lacrosse) in high school, and I have never had any consequences participating in athletics due to tuber sclerosis. I am very lucky to do the things I love.”

Stegemann became a bit of a spokesperson for the disorder, which according to the alliance affects one in 6,000 at birth. He has made two trips (2015, 2017) to Washington, D.C. to appear before lawmakers to advocate for funding. 

“That was a unique and great experience I would not have changed for the world,” he said of the initial trip to the nation’s capital. “I love the fact that I live my life not having to change my lifestyle (because I have tuber sclerosis), but the fact that I can make a difference in other people’s lives by telling my story makes me feel very humble.”  

Sharing stories and meeting people who are enduring similar health issues can be a powerful and rewarding experience.

“Half the time when I mentioned lupus, people had never even heard of it,” said Boxx, who at first did not reveal her diagnosis, preferring to keep it to herself before realizing she had a great platform to tell her story. 

“That is what I wanted to change. I wanted people to know more about it so that we could get more research and more backing for money to find a cure for it. Lupus is a hard disease because you look normal the majority of the time, so it is hard for people to understand the symptoms that you have and the hardships that you are going through.”

On more than 200 occasions since 2003 Freeman has visited summer camps for children with diabetes. Like Boxx, he wants to share his story and tell young people what they can accomplish, not what they cannot.

“When I was diagnosed everything was so negative, like ‘You can’t (ski) anymore and you have to give it up,’ ” he said. “Those messages were not true. Living with diabetes is a constant stress and it is difficult sometimes, but you don’t have to give things up that you love. I wanted to get that point across because I felt the messages I received off the bat were not the messages I needed to hear.”

Thanks to individuals like Boxx, Freeman, Bambola, Wheeler and Stegemann, many individuals are learning that they, too, can overcome chronic illnesses and achieve.

Tom Layberger has spent more than 25 years as a writer, editor and web producer for various media outlets. Tom, who resides in Tampa, is a graduate of the University of South Florida. Follow him on Twitter @TomLay810

Editor’s note: For the  2019-2020 academic year, the Global Sport Institute’s research theme will be “Sport and the body.” The Institute will conduct and fund research and host events that will explore a myriad of topics related to the body.