Demands Raynaud’s Phenomenon Be Taken More Seriously
If Team USA Gymnastics Champion Kristle Lowell has her way, Raynaud’s Phenomenon will become widely recognized as a potentially serious, year-round disability—akin to disorders that are taken far more seriously.
Kristle, 26, has secondary Raynaud’s, a component of her affliction with Ehlers-Danlos Syndrome, a connective tissue disorder.
Like many Raynaud’s sufferers (“Frosties”), the champion gymnast is used to being dismissed — considered a nuisance — when asking for the heat to be turned up in the winter and the air conditioning to be turned down indoors all year. But when an episode of cold exposure turned to frostbite, and then gangrene, she vowed to devote herself to Raynaud’s awareness, working with the Raynaud’s Association to spread the message.
“I had looked at my Raynaud’s as a weakness and I was worried others would view it that way,” she explains. “But I am no longer ashamed to demand a reasonable accommodation for my disability. Never again will I be quiet putting my health at risk.”
The bronze medal-holding gymnastics champion cites her Raynaud’s as a possible factor into the reasoning why she was not named to Team USA to represent her country for the World Championships held in Bulgaria in November, 2017. It was the first time she did not make the team since she began competing in 2011.
In 2013, Kristle became the first American woman to win the world double-mini trampoline title since 1996. But 2017 brought a new challenge when trying out for the Gymnastics National Team at the Karolyi Ranch Training Center in Texas. “A coach told me that the other girls weren’t comfortable rooming with me because I needed the room to be warm. They assigned me to a room by myself, but the air conditioning was abnormally high,” she explained.
Kristle asked to have it shut down and eventually called for medical assistance in the middle of the night, but no one came. “Texas is one of the last places anyone would think that someone can get frostbite,” she said. “I live outside of Chicago, but air conditioning causes more injuries than normal winters ever do.”
The next night at the ranch, she asked for “a reasonable accommodation for a disability, “but the air conditioning was still too high. The portable heater didn’t work. “I felt like if I demanded help it would be held against me because the official criteria for selection to the Team was ‘to be able to contribute to a team dynamic’. I was afraid to seek help from one of the doctors.”
Her room thermostat controlled not just her room, but also the rooms where other competitors were assigned. “I had to choose risking a personal injury or creating discomfort for the other people trying out for the Team,” she said.
“The next morning I woke up with severe pain. I realized I had frostbite in my ears,” she recalls. “Everything hurt. Somehow, I had to find the strength to compete that day. It felt like my skin was on fire.”
Returning home from the Karolyi Ranch, Kristle recalls waking up to the sound of fruit flies. “I smelled something really bad, but then I realized the smell was coming from me and the fruit flies were buzzing around my ears.”
Kristle’s mother, a wound care nurse, got her a same-day appointment with a doctor who prescribed powerful antibiotics that were effective in saving her ears. “I have never been so scared before to think that I could lose a body part at such a young age,” she says. Although Kristle had been self-conscious about her large ears (her nickname was Dobby from Harry Potter), she now says, “I love my big ears and was worried I was going to lose them. I will accept whatever life throws at me but I think I might look a little odd if they had to amputate my ears.”
After this episode, Kristle resolved not to be bothered by people’s stares. For warm-ups in the stadium during the Winter Classic Invitational meet, she wore a huge orange Canada Goose jacket. “I figured they can stare at me for wearing a jacket or they can stare at me for not having ears!”
Although 2018 continues to be challenging, Kristle’s assertiveness about her disability has brought welcome accommodations. “I had to find a new gym after my former gym told me they could no longer support elite level athletes. My new place is warmer and they allow me to bring a space heater for when I’m training alone. I wear a leotard with the Raynaud’s Association logo, and I wear it with pride instead of with shame,” she adds.
Volt, a manufacturer of heated clothing (and a Raynaud’s Association supporter), made Kristle a custom heated hoodie that she wears to keep her core body temperature warm. And her new coach also suffers from Raynaud’s. “It’s so nice to have someone this close to relate to, ”she says. “I used to feel so isolated but it is really nice to have a coach that says ‘It is too cold’ so I know I am not crazy. He tells me my frostbite scars are ‘bad ass’!”
Her days as a champion gymnast are looking bright again too. At the recent National Championships trial in Greensboro, NC, the stadium temperature was ideal — unlike at most public places where the air is chilly to keep the spectators comfortable. Kristle said she had a wonderful time competing, earning her spot back on Team USA. “I hit my third pass and I knew it. I was so happy I jumped off the mat and did a happy dance.” Kristle earned a bronze medal and was named to the USA National Team that day.
Yet Kristle’s struggles with Raynaud’s are far from over. World Championships this year will be in St. Petersburg, Russia in November. “I don’t know much about Russia but it sounds cold!”
Kristle’s biggest challenge, she says, is that she does not want to have Raynaud’s limit her life in any way. “I am not going to let Raynaud’s handicap my spirit in life. I’m going to travel the world and do what I love. “I’ve learned with the right tools anything is possible.”
Editor’s Note: In a follow-up article, Kristle shares her tips for living and working well with Raynaud’s. We’d love to hear your stories too!