She’s a blonde 18 year old. She wears glasses, doesn’t break five and a half feet in height, and seems up to date on current fashion trends. She wears shorts and airy blouses, and quietly carries on a conversation with her hands in her lap or clasped together with her elbows on a table top. Her shy smile and playful brown eyes let you know she’s paying attention and considering everything said. She chooses her words sparingly and adds to the conversation only when asked.
She stays up until three in the morning and doesn’t wake until well past noon. By outward appearance she is a stereotypical young adult.
Unlike some 20 million young adults her age, she has decided not to go to college and instead will pursue the photography career she has been growing and nurturing for some time now. Her professional Instagram feed is full of kissing couples and cooing babies. She has found a niche in photographing births and is up for any new experience when it comes to her craft. And once you get to know her, you find her personality and zeal for what she does is infectious.
On the inside, though, she’s having a hard time keeping it together. But not in the way you might think.
Before medication, her resting heart rate was 170. Her digestive track doesn’t work properly. Her kidneys are a risk because they too struggle to function. While temperature regulation isn’t an issue, she can’t stay outdoors during an Arkansas summer because of effects the heat will eventually have on her depressed physical state.
Isabelle Berryhill — this blonde, glasses-wearing, modern-dressing 18 year old — suffers from a disease that affects the function of her automatic nervous system. Dysautonomia, or internal autonomic disorder, has been dubbed an “invisible disease.” It’s difficult to diagnose. What doctors think, but can’t definitively say, is that the nerves in her brain and spinal cord don’t communicate properly with her automatic organ systems. It’s a misfiring of the nervous system. Medical professionals have pinpointed the start of the disease to a heat stroke Isabelle had at 14 years of age while attending a summer camp.
Both of her parents, however, thought nothing of it. After a few hours in the hospital receiving fluids via IV, she was released to rest at home. It wasn’t until two years later Isabelle began having problems.
The first doctor couldn’t determine what exactly was wrong with the tween. She was referred to a specialist who also struggled with a diagnosis. After a few trips to the children’s hospital — from which Isabelle was sent away with nothing more than fluids and a few overnight stays — her mother called on a family friend in hopes they could diagnose the disease.
Isabelle was exhibiting symptoms similar to what the family friend had seen in his stint in the military. Soldiers would pass out in the field dehydrated and unable to return to work. There were a few ideas, but one common explanation: extended periods of time in the heat caused an overheating of nerves, which created a disconnect between the brain, spinal cord, and the rest of the body. Isabelle was experiencing the same problem.
Isabelle was fine for two years after the heat stroke, but eventually her body couldn’t take the damage. She began exhibiting symptoms of the severed communication — kidneys shutting down, intestines not digesting food properly, and an erratic heart rate.
“It took me a while to come to terms with it because I didn’t want to be sick,” Isabelle said.
Prior to that experience Isabelle had always been a healthy child, which made such a crippling illness all the more significant to her parents. Isabelle wasn’t one to fake illness to get out of responsibilities. But because of the sudden decline in her health she began missing school and the opportunities that came with it. Her family, at a loss for what was going on and determined to do what was best for their daughter, decided to enroll her in online school and began reworking her schedule to compensate for the changes Isabelle’s body demanded they make.
Isabelle, too, began to fight for her new way of life. She now does what she can to advocate for those living with dysautonomia. “So many people live with it and don’t know about it,” Isabelle said. “That’s what inspired me to do it.”
Her schedule consists of waking up at 11 a.m., letting her body fully awaken and maybe eat breakfast coupled with medication. Should her symptoms subside, Isabelle can tackle what she has planned for the day. If they don’t she considers more medication or time for her body to fully respond to movement. “Mornings make my symptoms a bit worse,” Isabelle said.
But Isabelle isn’t letting her health impose limits.
Her love for photography began at a young age and has blossomed into a thriving career. Isabelle has photographed weddings, births, and senior photos. She favors landscapes but doesn’t hesitate to document someone’s important day. “I started taking my photography seriously a year ago,” she said.
Her mother, who has always been a fan of photography, was the person who originally turned Isabelle on to it. By watching and learning from her mother, Isabelle’s own love and understanding of the art grew. “I just like how you can make something your own and everyone looks at it differently,” Isabelle said.
Isabelle has found that photography is the one thing that doesn’t prove to be limited by her disease “I feel like it’s something for me to do,” she said. “There’s not much I can do with this. I can’t have a regular eight to five job, so this is something I can do when I’m feeling good and I’m not having a bad day.”
Despite her bad days, Isabelle continues to strive toward growing her business, always looking for opportunities to learn more new methods or refine her photography. That drive to push through her health issues is what led her to apply for an expedition with National Geographic.
After a short essay, teacher references, and a few interviews with staff, Isabelle was one of 41 high school students selected to join professional photographers like Casey Kanode, Melissa Farlow, and Erika Larsen for a photography shoot at Yellowstone National Park.
The combination of Isabelle’s disease and traveling left her nervous about the trip itself. “I always made sure I had emergency medicines on me just in case,” she said. For a remote place like Yellowstone she couldn’t be too safe. Her symptoms, though, were almost nonexistent. Staying at Mammoth Hot Springs and venturing out into Yellowstone was good for her. “Barometric pressure and humidity have a lot to do with how well my symptoms are so I’m thinking that’s why my symptoms weren’t too bad there,” she said.
A relief from her symptoms isn’t the only thing Isabelle learned from the experience. “The biggest thing I took away would probably be that anything, even the most ordinary things, can be a great photo if you believe in it enough,” she said.
Looking to her future, Isabelle hopes to continue to grow her photography business and maybe even seek higher education for a degree related to photography. No matter her journey, she will continue to carry the spirit her parents have ingrained within her. “She’s a diver,” her mother says, referring to the way Isabelle can easily place herself into a situation.
Whether it’s a National Geographic expedition, scuba diving lessons, or local summer camps, Isabelle has a headstrong spirit and a willingness to lead. She inherited a fearlessness from her father, but she’s molded her future into something she can call her own. “It’s not about what our dreams are for her. It’s her life to live,” Tom Berryhill, Isabelle’s father, said. “It’s about her recognizing what her dreams are and us trying to help her be successful at it.”
Her parents, while they want the best for their daughter, do what they can to make sure she is independently making a way for herself.